Delivery systems have improved with the thinner shorter needles for those using a pen and now if you can afford it the pump and the CGM devices. This is where I feel that the issues with death and diabetes comes into play and I think it involves the insulin delivery systems involving the pump. Am I wrong here I still inject insulin with the use of a pen, currently taking 4 plus shoots per day and lots of tests. Over the years I've experienced many severe reactions to the point of having seizers and passing out. That said and I realize that we are all different but I'm still here today, could it be that the pumping systems are to blame for these deaths or am I missing something here. I'm currently looking at getting a CGM and I know that the Medtronics and Animas both have built in CGM's and the Medtronic has a suspend mode to stop insulin delivery, but these pumps that don't have the suspend mode what does that do to you and more importantly the constent flow of insulin. I'm meeting a representative today concerning a pump and a CGM, am trying to find the best case scenario for me my diabetes and more importantly returning to a much more normal life. All that said and done I find that the documentary really doesn't portray each and every individual living with diabetes because it is so individualized and quite complex to say the least. I don't know how my parents cope with having 5 boys 2 of which had T1D from the ages of 11 and 13 yet they did.
Admittedly this video presentation seems to paint a pretty bleak situation for those of us living with T1D. Undoubtedly it can or does impact all of those that come to know anyone living with T1D, but it's not a death sentence. I've been living with T1D for over 43years and back in the day we did not have any of the luxuries that exist today, and I don't recall hearing anything about deaths due to a hypoglycemic reactions. If I go back to my situation my mom use to have to sterilize my glass syringe everyday, and the needles seem to be a lot longer and thicker then they are today. I was taking 1 injection per day with a insulin derived from beef and pork, the insulins used were a fast acting Toronto and a longer acting NPH which would be mixed together in the same syringe. As for testing at the time all that was available was a urine test involving a test tube a tablets, this would evolved over time to a strip which would be peed on. Yes I had reactions and I would feel the onset of a low sugar reaction, and at times the paramedics would be summoned to my home or to the roadside. Over the years things have progressed in a positive way, yet they seem to have become possibly a bit more complex or not. The reason I say complex is back in the day I wasn't testing as much as I do now, 10 to 12 times in a day compared to maybe 1 urine test. Now the insulins have evolved immensely as well, with extremely fast acting insulins to the extremely long acting basal insulins. Cont.
I was diagnosed with Type 1 33 years ago at age 14. It never occurred to me that it could kill me and I’m grateful to my parents for not scaring me with that knowledge. I was able to live my life without the constant fear of death hanging over me. Granted, Grace may have a more difficult time staying in control than I did at that age, but I wish her parents could have found a way to teach her the importance of taking care of herself without instilling in her the fear of death. Also, I’m perplexed as to why she doesn’t have a CGM. I know they’re not 100% accurate, but between that and the dog the parents should be able to sleep through the night. The lack of sleep is probably taking as much of a toll on them as the stress of their daughter’s diabetes.
Side note, my 7-month old kitten wakes me up when my blood glucose drops below 50. She’s had no formal training! :)
Side note, my 7-month old kitten wakes me up when my blood glucose drops below 50. She’s had no formal training! :)
50 year T1 since 7 years old
First thing I learned from this doc (and definitely from my life) - I hope Patricia Chamberlain sees this - it is much harder on the mom than the kid! I can see it in this mom's eyes. Please believe that, and take some hope from that. To a kid, it's just a pain the the a$$, but to the mom it's dire. Have some faith that your kid, Grace, is incorporating into her life. Her life is not necessarily worse than other non-diabetic kids, it's just different. My parents always taught me that message - they'd say it's your choice, you can see this as horrible or you can see it as something you are lucky enough to be able to deal with and move on! Patricia, I'm SO sorry you have to go through this. Grace, I'm KIND OF sorry you have to go through this. :)
Biggest point I've seen on this thread is RE the money!! Companies make HUGE profits off of T1 diabetics and that has to change. Many cannot afford to treat their diabetes the way this family does. THAT is the real tragedy.
Anyway, good luck, and now I have to go thank my mom and dad for going through the worry when I was a kid and for teaching me to have a great attitude about it - the best thing they did for me in regards to T1D.
First thing I learned from this doc (and definitely from my life) - I hope Patricia Chamberlain sees this - it is much harder on the mom than the kid! I can see it in this mom's eyes. Please believe that, and take some hope from that. To a kid, it's just a pain the the a$$, but to the mom it's dire. Have some faith that your kid, Grace, is incorporating into her life. Her life is not necessarily worse than other non-diabetic kids, it's just different. My parents always taught me that message - they'd say it's your choice, you can see this as horrible or you can see it as something you are lucky enough to be able to deal with and move on! Patricia, I'm SO sorry you have to go through this. Grace, I'm KIND OF sorry you have to go through this. :)
Biggest point I've seen on this thread is RE the money!! Companies make HUGE profits off of T1 diabetics and that has to change. Many cannot afford to treat their diabetes the way this family does. THAT is the real tragedy.
Anyway, good luck, and now I have to go thank my mom and dad for going through the worry when I was a kid and for teaching me to have a great attitude about it - the best thing they did for me in regards to T1D.
I have had type 1 for 8 yrs now. I think the portrayal of living with diabetes in this video is absurd. Eat properly, don't take too much basal insulin, and use a cgm and management is easy. This portrayal seems to try and evoke pity and sadness, which is the opposite of what is appropriate. Information, management, exercise, and optimism ought be underscored. I don't have that many supplies (though I use all those products and more) and I don't have 1000 juice boxes lined up. It seems that the parents are making a bigger deal than this really is. Nobody is going to die suddenly if they know what they are doing. Using a pump without a cgm doesn't really make sense. I'm angry that so many people will be misinformed about living with this disease, and I can't even count how many people are going to send me this link. Empower this poor girl rather than burdening her. Hovering parents do more harm than good, and she needs to manage her own disease.
2
Niceguy, I am really happy that your experience with Type 1 diabetes is "easy". Many patients with Type 1 diabetes, especially adolescents with hormonal changes, have wide swings in their blood sugars. They may also have hypoglycemia unawareness (unable to recognize low blood sugar). Saying this depiction is "absurd" because your experience is easier is really not being a "nice guy". It is actually pretty heartless. This child is probably alive because of all the parental SUPPORT. She is obviously not able to manage independently yet. Don't be judgmental of other people. Please get more education before you make such unkind remarks. Christine Mealey RN, MSN, CDE (Certified Diabetes Educator and Mom to a child living with Type 1 Diabetes). Please read this link to help you get started. http://perlebioscience.com/blog_type_1_roller_coaster/. This article discusses a typical teenager’s glucose readings at the Joslin Diabetes Camp, which is one of the best diabetes camps in the country, where everyone there knows how to manage type 1 diabetes as good, if not better than anyone in the country". GREAT ARTICLE ABOUT THE CHALLENGES OF MANAGING TYPE 1 DIABETES IN TEENS.
4
No matter who is telling the story, you cannot put a positive spin on it. Type 1 diabetes is a life-long sentence. There is no cure, no reprieve. There is treatment ant there is management, and that is all. I feel for Grace because I, too, am a type 1 diabetic. I was diagnosed at the age of almost 8 in 1973. My parents were not at all diligent about my care, and except for giving me my insulin shot every day (yes, I said "shot" because I only got one shot of NPH every day), my parents didn't really take care of me. To this day, at almost 50, I still struggle daily with eating properly because I was brought up believing that as long as I took the insulin every day, then I could do as I wanted otherwise. I now suffer several complications of the disease including blindness of one of my eyes and partial blindness in the other eye. I had to stop driving 10 years ago, which is just another blow that diabetes has struck. I feel very bad for Grace's parents who have to get up so often to check her blood sugars in the night. I chose not to have children because my fear of passing on this horrible disease was too great.
I feel your pain (the family in the movie). My youngest son (now 29) was diagnosed with type 1 when he was 12. He received his first pump a year later. For the first year (before pump) and for a year after (first pump year) I'd get up each night at 2 so he could check his BG number. Some nights we'd not get back to sleep (numbers were all over the map). After the first year, things seemed to level out. Happy to report that he's diabetes healthy now but those first few years were work (for all of us!).
I'm surprised this young woman is not on a Constant Glucose Monitoring System (CGMS). This sort of device communicates with the pump to make a degree of adjustment in insulin. My son has this now and has more control than he did strictly with the pump.
Of course, these devices are very expensive and her insurance has to approve payment for the device (and supplies, which can be VERY EXPENSIVE).
Overall, as a parent, this is one tough thing to watch your child to go (and grow) through. Type 1 used to be more of a death sentence (a great improvement has been the ACA, since type 1 folks can no longer be turned down for insurance). I'm hoping that one day some sort of stem cell injection and a few meds will put this disease in the trash can of history.
I'm surprised this young woman is not on a Constant Glucose Monitoring System (CGMS). This sort of device communicates with the pump to make a degree of adjustment in insulin. My son has this now and has more control than he did strictly with the pump.
Of course, these devices are very expensive and her insurance has to approve payment for the device (and supplies, which can be VERY EXPENSIVE).
Overall, as a parent, this is one tough thing to watch your child to go (and grow) through. Type 1 used to be more of a death sentence (a great improvement has been the ACA, since type 1 folks can no longer be turned down for insurance). I'm hoping that one day some sort of stem cell injection and a few meds will put this disease in the trash can of history.
Has Grace ever tried a low-carbohydrate diet? If she's on a low-fat, high-carb diet, that could make the BG swings worse. Could she see Dr Richard Bernstein in Mamaroneck, NY? He's the guru of low-carb diets and author of the book "Diabetes Solution," and he has had type 1 himself since the 1940s.
He was the first patient to get a glucometer and then only got it because his wife was an MD. They wouldn't sell meters to patients because the doctors thought patients weren't able to take charge of their diabetes.
He was the first patient to get a glucometer and then only got it because his wife was an MD. They wouldn't sell meters to patients because the doctors thought patients weren't able to take charge of their diabetes.
1
Many saw this video and found it too grim. I found the statement "every 3 hours keeps her safe, every 5 or 6 hours could be dangerous, and by dangerous I mean, you know, she could die" problematic. I have searched online and failed to find medical evidence or data to support that fear.
I hope you can also read about the parent of a another 15 year old diabetic, Ed Damiano, who is working on a "bionic" pancreas in the current issue of Time.
http://time.com/3687291/the-next-best-thing-to-a-cure-for-diabetes/
Unfortunately, there's a paywall at time.com (I read the print version). The story describes Damiano's effort to bring an artificial to market by 2017. The prototype works with a sesnsor for CGM, a pump that delivers insulin or glucagon, and an algorighm that adjusts delivery with the goal of allowing diabetis to go about their day without having to make a single decision about their care.
This is exciting. Some links to non paywall protected news:
http://www.diabetesforecast.org/2014/mar/the-artificial-pancreas-aces.html
http://www.bbc.co.uk/news/health-28810813
http://www.healthleadersmedia.com/content/LED-311981/HL20-Ed-Damiano-PhD...
I hope you can also read about the parent of a another 15 year old diabetic, Ed Damiano, who is working on a "bionic" pancreas in the current issue of Time.
http://time.com/3687291/the-next-best-thing-to-a-cure-for-diabetes/
Unfortunately, there's a paywall at time.com (I read the print version). The story describes Damiano's effort to bring an artificial to market by 2017. The prototype works with a sesnsor for CGM, a pump that delivers insulin or glucagon, and an algorighm that adjusts delivery with the goal of allowing diabetis to go about their day without having to make a single decision about their care.
This is exciting. Some links to non paywall protected news:
http://www.diabetesforecast.org/2014/mar/the-artificial-pancreas-aces.html
http://www.bbc.co.uk/news/health-28810813
http://www.healthleadersmedia.com/content/LED-311981/HL20-Ed-Damiano-PhD...
1
I've heard Dr. Damiano speak many times. He is brilliant , he and his team are dong wonderful thugs to advance technology to make living with diabetes so much easier. My son cannot wait for the bionic pancreas to become a reality.
This short beautiful film has educated me. I understood that T1 diabetes was genetic, but not that it could be so difficult to manage. The film has motivated me to want to learn more. I know many T2s and watch them manage the disease, often thinking how much work it seems - then when I saw what T1 can entail I couldn't believe it; can't imagine how they cope. I wish Grace and her family all the best, and thank them and the filmmaker for opening my eyes and teaching me something.
1
Part 1
I'm 36 and have had T1D for 21 years. I have a pump, a CGMS, and fairly brittle diabetes as of the past 5 years. When I was younger, my BGs were more stable. Despite the brittle BGs, I am fairly independent, have a successful teaching career, and enjoy my life. I just read 100 of these comments! So much is written, but I want to add a few thoughts.
1)This film does not attempt to suggest that Grace's experience is common to all diabetics. It DOES offer us a window into this family's struggle with T1D. It reminded me that some of us have extreme difficulties with our BGs despite the best attempts at control. People blame us for our BGs so often, but this placed the blame where it belongs: on the illness. I appreciated that a family was courageous enough to share with us the fear and despair and anxiety that sometimes come with T1D. Even though I don't always feel the negative side of this disease, I sure do sometimes. It felt validating to have someone lay out their supplies and look into that camera. Thanks to Patricia and Grace for having the courage to do that.
2) A lot of readers have discussed the lack of CGMS use in this family's diabetic management plan. The CGM has helped me wake up in the night from lows, and that has increased my safety on the nights that it did. It also woke me up with a "40" 3 times last night, when my BG was actually 150. I've called Medtronic, I'm not doing anything wrong. I'm glad I don't have Threshhold Suspend turned on.
I'm 36 and have had T1D for 21 years. I have a pump, a CGMS, and fairly brittle diabetes as of the past 5 years. When I was younger, my BGs were more stable. Despite the brittle BGs, I am fairly independent, have a successful teaching career, and enjoy my life. I just read 100 of these comments! So much is written, but I want to add a few thoughts.
1)This film does not attempt to suggest that Grace's experience is common to all diabetics. It DOES offer us a window into this family's struggle with T1D. It reminded me that some of us have extreme difficulties with our BGs despite the best attempts at control. People blame us for our BGs so often, but this placed the blame where it belongs: on the illness. I appreciated that a family was courageous enough to share with us the fear and despair and anxiety that sometimes come with T1D. Even though I don't always feel the negative side of this disease, I sure do sometimes. It felt validating to have someone lay out their supplies and look into that camera. Thanks to Patricia and Grace for having the courage to do that.
2) A lot of readers have discussed the lack of CGMS use in this family's diabetic management plan. The CGM has helped me wake up in the night from lows, and that has increased my safety on the nights that it did. It also woke me up with a "40" 3 times last night, when my BG was actually 150. I've called Medtronic, I'm not doing anything wrong. I'm glad I don't have Threshhold Suspend turned on.
4
A complete exaggeration! This mother should be ashamed that she out out so much misinformation just to creat drama and donations. 4 deaths - two suicide and one from heart condition. Not four from DKA. live this life with 2 Type One sons, and we don't have 1/4 of the amount of drama portrayed here. Just an awful representation!!!!!
4
Like many others, I too was alarmed when I saw this video. As a mom of a newly diagnosed 19 year old, I was reminded of our first month before he was able to use the CGM, when we had to wake him up to check his levels. That was an especially tough month for all of us. After getting the CGM, things so improved. He is a college student, living away, independently at school. Again, the CGM, while not a perfect solution because accuracy can be a problem, is by far a remarkable advance and so helpful.
Also, there is a share device that enables doctors or parents a way to see the blood glucose level when the child/teen is sleeping (or near the docking device). Dexcom has just introduced a new feature to be distributed starting in March -- a wifi component so that parents or doctors can see the bg on their smart phones whenever they want -- and the alarms will go off for parents as well as for the teen, to help with safety for any lows. For more information on the latest products, try the online newsletter Diatribe -- website is: http://diatribe.org
I also highly recommend the Naomi Berrie Diabetes Center in NYC -- part of Columbia University Medical Center -- they are a state of the art medical facility with knowledgeable and empathic nursing educators and doctors, and are steeped in research for improvements and new approaches. Their website is http://www.nbdiabetes.org and phone is 212 -851-5494
I wish the very best to everyone here -- we are all in it together.
Also, there is a share device that enables doctors or parents a way to see the blood glucose level when the child/teen is sleeping (or near the docking device). Dexcom has just introduced a new feature to be distributed starting in March -- a wifi component so that parents or doctors can see the bg on their smart phones whenever they want -- and the alarms will go off for parents as well as for the teen, to help with safety for any lows. For more information on the latest products, try the online newsletter Diatribe -- website is: http://diatribe.org
I also highly recommend the Naomi Berrie Diabetes Center in NYC -- part of Columbia University Medical Center -- they are a state of the art medical facility with knowledgeable and empathic nursing educators and doctors, and are steeped in research for improvements and new approaches. Their website is http://www.nbdiabetes.org and phone is 212 -851-5494
I wish the very best to everyone here -- we are all in it together.
3
part 2 Imagine--
4000+ people... close to 1/3 are children , thru adults who have type 1,
and their families and siblings without type 1...A Humongous exhibition Hall with all the newest technology available to see..
Laughing, Learning at educational sessions for everyone from babies to grandparents .Bonding with other families from all over the USA and other countries who have type 1 kids .learning that you're not alone ..
sitting at the pool- seeing insulin pumps on chairs, snacks and juice boxes all over. Not having to worry that you forgot you "sugar" in your room...
used test strips in the strangest places..
At mealtimes- every type one is checking their BS , taking insulin....
Not having to worry if you run out of test strips, infusion sets, syringes, or any other "D" supplies..
It's NORMAL to have type 1 this week...
the support is unreal... and it lasts throughout the year thanks to social media, facebook etc....and the friends parents and children make...
My son, now 22, was diagnosed when he was 9. he's traveled out of the country and is away at college.
Sure there were tough times,
hi and low blood sugars.., sick days and nights. still happens..
its not easy to mimic a pancreas.
this summer will be our 14th conference.
and if/when they ever find a cure??
we'll probably still have a yearly conference....its a way of life and support that has helped my son and family grow up and have a normal life- Despite having "freaking Diabetes"
4000+ people... close to 1/3 are children , thru adults who have type 1,
and their families and siblings without type 1...A Humongous exhibition Hall with all the newest technology available to see..
Laughing, Learning at educational sessions for everyone from babies to grandparents .Bonding with other families from all over the USA and other countries who have type 1 kids .learning that you're not alone ..
sitting at the pool- seeing insulin pumps on chairs, snacks and juice boxes all over. Not having to worry that you forgot you "sugar" in your room...
used test strips in the strangest places..
At mealtimes- every type one is checking their BS , taking insulin....
Not having to worry if you run out of test strips, infusion sets, syringes, or any other "D" supplies..
It's NORMAL to have type 1 this week...
the support is unreal... and it lasts throughout the year thanks to social media, facebook etc....and the friends parents and children make...
My son, now 22, was diagnosed when he was 9. he's traveled out of the country and is away at college.
Sure there were tough times,
hi and low blood sugars.., sick days and nights. still happens..
its not easy to mimic a pancreas.
this summer will be our 14th conference.
and if/when they ever find a cure??
we'll probably still have a yearly conference....its a way of life and support that has helped my son and family grow up and have a normal life- Despite having "freaking Diabetes"
3
Yes, Stacey - that's why it was called 'juvenile diabetes,' because those who were affected WERE (primarily) children.
Part 1-
I wish that Joe Callander and the Chamberlain family could experience the ChildenwithDiabetes.com's annual "International Friends for life conference held every year in Orlando ,Florida. This year its from July 6-12th at Disneys Coronado Springs resort. Joe- Come to this conference and then write another article...
heres a link in case anyone is interested...
http://www.childrenwithdiabetes.com/activities/Orlando2015/
I wish that Joe Callander and the Chamberlain family could experience the ChildenwithDiabetes.com's annual "International Friends for life conference held every year in Orlando ,Florida. This year its from July 6-12th at Disneys Coronado Springs resort. Joe- Come to this conference and then write another article...
heres a link in case anyone is interested...
http://www.childrenwithdiabetes.com/activities/Orlando2015/
3
I don't mind that the filmmaker shows the daily grind of caring for a young child with T1D. But, I think he needs to show the positives as well; and to show how technical and medical advancements have helped these kids lead normal lives. It is hard to wake up all those times -- yes. Do I occasionally do it with my 18 yr. old? Yes. Does she wear a CGM all the time? No, but she does sometimes. It helps the endo correct her insulin dosages. Can these kids live positive lives? Yes. And yes, it is challenging - the ups and downs, but it can be managed. They can lead positive lives. Do we need funding for research? Yes. But please show both sides. Don't scare people. It can have a negative backlash on people's opinions and how they treat those with T1D.
To Grace's dad: Work with your endo to see how often you really have to wake up and test. I remember 3 am and 6 am (before school sometimes) - 12 am sometimes not all the time.
To Grace's dad: Work with your endo to see how often you really have to wake up and test. I remember 3 am and 6 am (before school sometimes) - 12 am sometimes not all the time.
1
I've been struggling with how to articulate about the "dark side" of T1 being presented here that a lot of my fellow T1s are objecting to. It's something like this: I've had this disease for 31 years, and ever since the day I was diagnosed I've been hearing "don't worry, a cure is coming within 5 years--10 tops!" (kinda like fusion power or getting our troops out of the Middle East :-P ).
Now it IS the case that the whole mess is easier to manage than it was. Any of us who started out peeing on strips and padlocked to the R/NPH regimen know that.
But that huge pile of diabetic gear on the kitchen table carries an important message that I DO think should be out there. Who else has been annoyed when someone says "Oh, diabetes? You just have to take a pill, right?"* or words to that effect. A) It's not that you want to hold a pity-party, but it's exasperating to have something that affects your life on so many levels minimized or grossly misunderstood.
But more important is B) I want people to know that, while we're glad we have that pile, that pile is what we have instead of a cure. And while a lot of us can afford the pile, not all of us can. And it's worth remembering that that pile represents not just a lot of effort for the diabetic (and her parents). It also represents a huge industry that, not to put too fine a point on it, generates huge profits that would go away if we were able to cure the disease and not just incrementally making it easier to manage.
Now it IS the case that the whole mess is easier to manage than it was. Any of us who started out peeing on strips and padlocked to the R/NPH regimen know that.
But that huge pile of diabetic gear on the kitchen table carries an important message that I DO think should be out there. Who else has been annoyed when someone says "Oh, diabetes? You just have to take a pill, right?"* or words to that effect. A) It's not that you want to hold a pity-party, but it's exasperating to have something that affects your life on so many levels minimized or grossly misunderstood.
But more important is B) I want people to know that, while we're glad we have that pile, that pile is what we have instead of a cure. And while a lot of us can afford the pile, not all of us can. And it's worth remembering that that pile represents not just a lot of effort for the diabetic (and her parents). It also represents a huge industry that, not to put too fine a point on it, generates huge profits that would go away if we were able to cure the disease and not just incrementally making it easier to manage.
19
My daughter is about Grace's age and has had T1D for a little over three years. Do we check every three hours? No. Do we have a diabetes dog? No. Do we know any children who have died? No. Do we have the same number of supplies stuffed in closets around the house? Yes. Do I have the same fears as Grace's mother? Absolutely.
This was a story about a family, not an instructional video for a diabetes clinic. It doesn't have to mirror my experience in order to be worthwhile. I applaud and thank this family for their bravery and openness.
This was a story about a family, not an instructional video for a diabetes clinic. It doesn't have to mirror my experience in order to be worthwhile. I applaud and thank this family for their bravery and openness.
9
This is Grace's dad , and I will try to provide some of the clarification commenters have asked for.
1. re the apparent inconsistency between statements that Grace maintains an excellent A1c, and her being 'volatile'; both are true. The A1c is only one measure, and an important one, for assessing aT1s healthfulness. An A1c of 7 may very well include erratic fluctuations.
2. re our choice to not use a CGMS, while advocating for the AP: we say that the CGMS is great technology. Yes, some factors in our decision had to with adding more invasive equipment to our child's body, plus the safety issues for night sleep, and several other factors. However, our approach was developed for Grace the 7 year child and was never viewed as permanent. As she has become older we have talked about a variety of strategies that can work well for her. When the AP is available it will certainly be one.
3. re the idea that we offer a negative picture of T1D: seriously, there is room for the negative and the positive, as long as both are real and represent an effort to help. You can't just have the light side of the moon and not the dark, otherwise there's no moon at all.
4. finally, please remember that a very talented, creative film maker asked us for a behind the scenes look at our family situation with T1D; then , he crafted a 12 minute film to encapsulate his subject matter in an artistic way. The film is getting a huge response, and we are happy about that...including the disagreements!
1. re the apparent inconsistency between statements that Grace maintains an excellent A1c, and her being 'volatile'; both are true. The A1c is only one measure, and an important one, for assessing aT1s healthfulness. An A1c of 7 may very well include erratic fluctuations.
2. re our choice to not use a CGMS, while advocating for the AP: we say that the CGMS is great technology. Yes, some factors in our decision had to with adding more invasive equipment to our child's body, plus the safety issues for night sleep, and several other factors. However, our approach was developed for Grace the 7 year child and was never viewed as permanent. As she has become older we have talked about a variety of strategies that can work well for her. When the AP is available it will certainly be one.
3. re the idea that we offer a negative picture of T1D: seriously, there is room for the negative and the positive, as long as both are real and represent an effort to help. You can't just have the light side of the moon and not the dark, otherwise there's no moon at all.
4. finally, please remember that a very talented, creative film maker asked us for a behind the scenes look at our family situation with T1D; then , he crafted a 12 minute film to encapsulate his subject matter in an artistic way. The film is getting a huge response, and we are happy about that...including the disagreements!
19
Dennis and Patricia - I commend you on your raw and honest portrayal of life with Type 1 Diabetes. May I just say that when I first saw this link posted on social media is was share by one of the worlds leading scientists in cure-focused research... this should be a testament to how impactful this peek into your life is.
As the mother of a T1D when I initially saw the title I immediately thought, "That is my schedule"... midnight, 3, and 6. I am a single parent and sole provider of my son - and he has no other siblings... it's just me and my little guy. And except for a few minute things... you have portrayed our lives.
We have a diabetic alert dog, a pump, and we actually have a CGM... I still check him at midnight, 3, and 6. I do this because I am taking no chances with my child's wellbeing and livelihood. Most nights he is perfectly fine... others I have to intervene. I will never take the chance that the one night I don't check is the night I should have.
I have been on your end of criticism as well. When we started a Movement on social media (Free Diabetics Movement) and some people within the community didn't like the way we chose to bring awareness. They call it negative, we call it honesty.
There is no way to get the non-diabetic public to understand the seriousness of this disease without showing some ugly truths of T1D. It is possible to live good, happy lives without always putting a positive spin on T1D.
What you are doing WILL change lives. Thank you.
As the mother of a T1D when I initially saw the title I immediately thought, "That is my schedule"... midnight, 3, and 6. I am a single parent and sole provider of my son - and he has no other siblings... it's just me and my little guy. And except for a few minute things... you have portrayed our lives.
We have a diabetic alert dog, a pump, and we actually have a CGM... I still check him at midnight, 3, and 6. I do this because I am taking no chances with my child's wellbeing and livelihood. Most nights he is perfectly fine... others I have to intervene. I will never take the chance that the one night I don't check is the night I should have.
I have been on your end of criticism as well. When we started a Movement on social media (Free Diabetics Movement) and some people within the community didn't like the way we chose to bring awareness. They call it negative, we call it honesty.
There is no way to get the non-diabetic public to understand the seriousness of this disease without showing some ugly truths of T1D. It is possible to live good, happy lives without always putting a positive spin on T1D.
What you are doing WILL change lives. Thank you.
3
I just wanted to say hi and let you know that you're not alone. My son was diagnosed at 2 and his endocrinologist always says he doesn't respond like other diabetics. We have a good average but it is mostly highs and lows. It's for the most part controlled but we are constantly adjusting his dosages. What I wanted to really share with you was that there was a time when he was completely unpredictable and that was when he ate gluten. He tested positive for the celiac antibody at the same time as his type 1 diagnosis but had to continue eating gluten until his biopsy. That actually came back with mixed results but we were told to cut it out of his diet anyway. I'm so thankful we did. Almost immediately we had better control over his sugars. We were told by his endo that 1 in 8 type 1 diabetics actually have celiac disease. If he gets gluten we can't control his sugars. He gets super low, crazy high, and nowhere in between. I know you've probably tried a lot but I was wondering if you'd try go gluten free for a few weeks to see if you notice a difference. I pray for all the best in your family.
1
Why do people - who are single parents, such as you - seem to think it's worth 'pointing out,' and in such a purposeful way as you; 'it's just me and my little guy.'
Your familial situation IS irrelevant.
You can 'plug' that line in anywhere; 'I'm a single parent, and I have bills. I'm a single parent, and I got sick and had to stay home. I'm a single parent, but, recipes are usually designed for more than one.'
Get OVER it.
It's just as pointless as (no names mentioned here) people using the rhetorical argument statement; 'think about the children.'
It is - consciously or not - a plea for pity.
I'm quoting here (an article by Jack Marshall in 2002 Art, Argument and Advocacy); 'the exhortation may be used to substitute in debate. It is popular for its capacity to stunt national discourse.'
In simplest terms - I'm NOT mocking your kid's health. What I AM trying is for you to understand that being a single parent DOES have hardships.
But, so does being a gay Jewish single parent, or, an Asian single parent with disabilities, or a black parent who is blind, and on, and on...
It's called 'life.'
Your familial situation IS irrelevant.
You can 'plug' that line in anywhere; 'I'm a single parent, and I have bills. I'm a single parent, and I got sick and had to stay home. I'm a single parent, but, recipes are usually designed for more than one.'
Get OVER it.
It's just as pointless as (no names mentioned here) people using the rhetorical argument statement; 'think about the children.'
It is - consciously or not - a plea for pity.
I'm quoting here (an article by Jack Marshall in 2002 Art, Argument and Advocacy); 'the exhortation may be used to substitute in debate. It is popular for its capacity to stunt national discourse.'
In simplest terms - I'm NOT mocking your kid's health. What I AM trying is for you to understand that being a single parent DOES have hardships.
But, so does being a gay Jewish single parent, or, an Asian single parent with disabilities, or a black parent who is blind, and on, and on...
It's called 'life.'
1
I've been a Type 1 diabetic since I was 7 or so, and I'm now in my Medicare years. I recall the guesswork we needed when I was a boy: no way to measure blood glucose outside of a doctor's office, so we used urinalysis, which measured highs, not lows, and way after the moment (it was fun for a little boy to play with bubbling test tubes that changed color, though). Only two types of insulin, and no disposable syringes or needles. It was a constant balancing act, and I'm sure it wasn't easy for my parents -- who, in retrospect, seemed confused (and no all our MDs seemed, shall I say, completely competent). I was "brittle" or labile, and that was rough, and lately I have reverted to the kind of diabetic who doesn't know when his glucose is low or even very low.
But I now test often, and have an insulin pump (a marvelous improvement) and a wonderful endocrinologist and staff who work with me as a partner -- which I demand.
My need to understand my condition led me first to study biology and biochemistry, and later everything about food. I became a journalist, editor, and yes, restaurant critic.
Good luck to Grace and her family, and all the diabetics out there. At 68, I'm happy and thriving, and you can be too.
But I now test often, and have an insulin pump (a marvelous improvement) and a wonderful endocrinologist and staff who work with me as a partner -- which I demand.
My need to understand my condition led me first to study biology and biochemistry, and later everything about food. I became a journalist, editor, and yes, restaurant critic.
Good luck to Grace and her family, and all the diabetics out there. At 68, I'm happy and thriving, and you can be too.
8
Ivsogrss, I share your experience. I was diagnosed in 1955 at the age of 8 and I can also say that I'm enjoying my life. Living well with a chronic disease requires maintenance, but you can live a full life that's not totally dominated by the disease. I wish Grace well and hope that she and her family will make an effort to participate in some of the excellent meetings/networking events for parents of and teens living with type 1.
That's a wonderful story!! Thank you for sharing.
Restaurant critic huh, dream job.
Restaurant critic huh, dream job.
Our endocrinologist actually told us to check every two hours when we make adjustments. Due to many factors we have to adjust often. I believe this family is doing the best they can. My daughter has hypo unawareness now and it is not from us checking her too often. She is hypo unaware because I ran her a bit high before we had a cgm. It was easier for her to recognize a low when falling from a higher number. Now that we strive to stay around 110 she can't feel a low until she is around 30. I am not going to let my daughter drop that low in her sleep in order to teach her a lesson on management and independence! Our endocrinologist would say that a 7% A1C is too high. She wants it around 6% consistently. I think men also forget that women/ teenage girls have monthly fluctuations they have to adjust to. For us that is a two week long roller coaster ride (darn hormones).
A few years back I read a story about a mother who made her daughter manage her own type 1 diabetes. It wasn't long before the child was found dead in her bed from diabetic related issues. The mother is in prison now! I wonder what those who are critical about Grace's mother would say about the mother who took that approach.
A few years back I read a story about a mother who made her daughter manage her own type 1 diabetes. It wasn't long before the child was found dead in her bed from diabetic related issues. The mother is in prison now! I wonder what those who are critical about Grace's mother would say about the mother who took that approach.
4
I'm sorry but I am just shaking my head here. You say you intentionally let your daughter run high blood sugars on a nightly basis (due to a fear of nighttime insulin reactions not waking her up in time, I assume), that this has caused the unawareness problem (in my opinion, the worst possible impediment to maintaining good control with a margin of safety) and now, apparently to compensate for years of poor control, you are trying to maintain an A1c of 6 -- in a teenager, yet.
You may drive yourself and your daughter insane trying to achieve this unrealistic goal. Your mental health is not your endocrinologist's chief concern, so you might want to get a second opinion on your A1c goals.
As for the appropriate role for parents of teenagers, remember that this needs to be a self-managed disease at the earliest possible date. When I was a teenager, my parents were there for me in a supporting role, not as managers. This worked out well. as it should. I don't think you should allow going to prison to be added to your list of worries.
You may drive yourself and your daughter insane trying to achieve this unrealistic goal. Your mental health is not your endocrinologist's chief concern, so you might want to get a second opinion on your A1c goals.
As for the appropriate role for parents of teenagers, remember that this needs to be a self-managed disease at the earliest possible date. When I was a teenager, my parents were there for me in a supporting role, not as managers. This worked out well. as it should. I don't think you should allow going to prison to be added to your list of worries.
I find the film interesting and well done. I had always viewed diabetes as a life-style problem until I became 60 years old and, being fit, well-nourished, and no body-fat, went to the ER with 600bgl and 11 A1C.
Finding family, friend(s), who understand can be a feudal experience. What comforts me most (and nowadays I look for as much comfort as possible) is the love this mother has for her child. Grace will grow up and face what she must, but having a family of love and care is comfort to me.
Finding family, friend(s), who understand can be a feudal experience. What comforts me most (and nowadays I look for as much comfort as possible) is the love this mother has for her child. Grace will grow up and face what she must, but having a family of love and care is comfort to me.
5
Unconditional Love.
"Uno-Conditional" Love.
That Uno condition is Love itself. The selflessness for the one, One Loves.
Thank you Mr. Callander for bringing us this warm short movie.
It is not only a work of creativity but also an inspiration for many.
And What Mrs. Patricia has done, its wonderfully ineffable. God bless her and her efforts.
"Uno-Conditional" Love.
That Uno condition is Love itself. The selflessness for the one, One Loves.
Thank you Mr. Callander for bringing us this warm short movie.
It is not only a work of creativity but also an inspiration for many.
And What Mrs. Patricia has done, its wonderfully ineffable. God bless her and her efforts.
From Grace's Mom
Since the film's release numerous individuals (mostly T1D parents) have expressed strong support for the film. Many have 'come out' to say that our experience with Grace is exactly what they have experienced, and a common sentiment coming through these contacts is 'this is a part of living with T1D that isn't talked about enough!'. We read the comments that express disagreement and, for the most part, thoughtful and reasonable questions are being thrown into the mix. These opinions haven't changed our views as presented in the film; rather, they illustrate the diversity within the T1D community. We've never intended to say our experience is the norm but we do believe it's under-exposed.
We have been very fortunate to have worked with excellent medical people (endos, peds, nurse eds) in two states with outstanding Diabetes treatment programs; we have also become very involved with preeminent research organizations like JDRF.
Finally, many comments on the critical side have raised the question about the CGMS, and why we don't use it. For us and our daughter's brand of T1 is the safety issue. We haven't had enough certainty she would awaken to a sensor alarm in the middle of the night, at least as a child. Severe hypo can have a slow, gradual onset, but can also escalate rapidly and dangerously...these 'out of the blue' bg drops have occurred with Grace.
To all the families who have expressed support: you are not alone!
Since the film's release numerous individuals (mostly T1D parents) have expressed strong support for the film. Many have 'come out' to say that our experience with Grace is exactly what they have experienced, and a common sentiment coming through these contacts is 'this is a part of living with T1D that isn't talked about enough!'. We read the comments that express disagreement and, for the most part, thoughtful and reasonable questions are being thrown into the mix. These opinions haven't changed our views as presented in the film; rather, they illustrate the diversity within the T1D community. We've never intended to say our experience is the norm but we do believe it's under-exposed.
We have been very fortunate to have worked with excellent medical people (endos, peds, nurse eds) in two states with outstanding Diabetes treatment programs; we have also become very involved with preeminent research organizations like JDRF.
Finally, many comments on the critical side have raised the question about the CGMS, and why we don't use it. For us and our daughter's brand of T1 is the safety issue. We haven't had enough certainty she would awaken to a sensor alarm in the middle of the night, at least as a child. Severe hypo can have a slow, gradual onset, but can also escalate rapidly and dangerously...these 'out of the blue' bg drops have occurred with Grace.
To all the families who have expressed support: you are not alone!
8
Hi Patricia. My 11 year old nephew is a T1D and was diagnosed 6 years ago. He has been on a pump for 5 years and his parents are just now looking into CGM's. Their concerns are the same as yours about having yet another piece of equipment to manage or another insertion site. Plus the recent advancements in CGM's have been significant which is another reason we have all started doing our research. I respect your decision to do this film and the way you take care of your daughter. Each T1D is different and thus their care is as well.
There is a very informative Facebook group called CGM in the Cloud. It is the biggest reason my SIL is considering the CGM. I recommend checking this group out. CGM's may still not be what your family chooses, but the group has given us great hope when it comes to helping my nephew. And their hashtag is #wearenotwaiting (that pretty much says it all). They have managed a way to have the CGM's report BG and trending BG sent to your computer, device or a Pebble watch! The Pebble watch alarms when they are out of range (as well as your other devices). Pretty cool stuff!
Best of luck to you and Grace.
There is a very informative Facebook group called CGM in the Cloud. It is the biggest reason my SIL is considering the CGM. I recommend checking this group out. CGM's may still not be what your family chooses, but the group has given us great hope when it comes to helping my nephew. And their hashtag is #wearenotwaiting (that pretty much says it all). They have managed a way to have the CGM's report BG and trending BG sent to your computer, device or a Pebble watch! The Pebble watch alarms when they are out of range (as well as your other devices). Pretty cool stuff!
Best of luck to you and Grace.
1
Patricia,
I appreciate your family opening up to show your experience and advocating for research and better treatment. I've been a volunteer in the DCCT and EDIC so I have contributed a tiny part to the research. I think the fear of sudden death is exaggerated. What are the odds of a brittle teenage diabetic dying suddenly from hypoglycemia while sleeping? I haven't found an answer but I suspect it's on the order of the odds of being struck by lightening.
I use a CGMS and have found it extremely helpful. The routine of you (the parents) getting up 3 times every night to check Grace's BG seems excessive though I know that my experience as a T1D is not the same as hers. She might not wake up for an alarm, but the system I use (with the same pump brand that Grace is using) will suspend insulin if you don't respond to a low sensor glucose alarm. You could hover less and I suspect that would make both of you happier. It's not perfect (nothing currently available is) and a true artificial pancreas would be great. Please take this in the spirit of a helpful suggestion that you don't rule out the use of the available technology rather than a criticism of how you're dealing with it now.
I appreciate your family opening up to show your experience and advocating for research and better treatment. I've been a volunteer in the DCCT and EDIC so I have contributed a tiny part to the research. I think the fear of sudden death is exaggerated. What are the odds of a brittle teenage diabetic dying suddenly from hypoglycemia while sleeping? I haven't found an answer but I suspect it's on the order of the odds of being struck by lightening.
I use a CGMS and have found it extremely helpful. The routine of you (the parents) getting up 3 times every night to check Grace's BG seems excessive though I know that my experience as a T1D is not the same as hers. She might not wake up for an alarm, but the system I use (with the same pump brand that Grace is using) will suspend insulin if you don't respond to a low sensor glucose alarm. You could hover less and I suspect that would make both of you happier. It's not perfect (nothing currently available is) and a true artificial pancreas would be great. Please take this in the spirit of a helpful suggestion that you don't rule out the use of the available technology rather than a criticism of how you're dealing with it now.
2
"I think the fear of sudden death is exaggerated." Exactly the point.
The film does a great job of creating the impression that insulin treatment has diabetics living at death's door on a daily basis. This is wrong on many levels and the use of this kind of propaganda to generate donations is not at all justified. Type 1 diabetes is bad enough in reality; it doesn't need or deserve this kind of exaggeration.
The film does a great job of creating the impression that insulin treatment has diabetics living at death's door on a daily basis. This is wrong on many levels and the use of this kind of propaganda to generate donations is not at all justified. Type 1 diabetes is bad enough in reality; it doesn't need or deserve this kind of exaggeration.
1
This is a wildly ineffective way at treating this girls diabetes, which either starts with her healthcare team or her parents (who seem to be interventionists). This girl is testing her sugar 11-12 times a day, my A1C is 7% or sub-7% consistently and I test 4-5 times a day. The main reason diabetics fail to recognize symptoms of low blood sugars is because they have had so many. The parents getting up testing her sugar at 12, 3, and 6 is absurd. My parents tested my sugar at 3am for a couple months after my diagnosis and thereafter only when I was going through difficult periods of managing my blood sugars.
It is unfortunate that her parents don't let her take more control, because once she is out on her own it will be like starting from scratch. She needs to show some initiative of managing this by herself on a day to day basis because mommy and daddy won't be there forever.
It is unfortunate that the article plays Grace as a 'victim', and that her parents have started a fundraiser for getting her an artificial pancreas. Maybe I'll start shirking on how I manage my diabetes, let my numbers get way out of hand, and start a fundraiser to get an artificial pancreas.
It is unfortunate that her parents don't let her take more control, because once she is out on her own it will be like starting from scratch. She needs to show some initiative of managing this by herself on a day to day basis because mommy and daddy won't be there forever.
It is unfortunate that the article plays Grace as a 'victim', and that her parents have started a fundraiser for getting her an artificial pancreas. Maybe I'll start shirking on how I manage my diabetes, let my numbers get way out of hand, and start a fundraiser to get an artificial pancreas.
3
Hi Josh,
While it's fantastic that you've been able to achieve such tight control with so few BG checks daily, that's just not possible for all of us. Being a volatile/brittle diabetic is often because there are other factors happening in the diabetic's body. I've been diabetic for 21 years, and sometimes I've had stable periods, and sometimes my sugars start swinging to extremes even when nothing in my life or routine has changed. I think it's important that as a community of people living with this disease, we don't compare other people's experience to our own, because we're all aware how different those experiences may be. While I have never in my life lost a diabetic friend, I can not imagine what terror would come from being a parent of a teenager who's lost multiple friends due to this illness.
While it's fantastic that you've been able to achieve such tight control with so few BG checks daily, that's just not possible for all of us. Being a volatile/brittle diabetic is often because there are other factors happening in the diabetic's body. I've been diabetic for 21 years, and sometimes I've had stable periods, and sometimes my sugars start swinging to extremes even when nothing in my life or routine has changed. I think it's important that as a community of people living with this disease, we don't compare other people's experience to our own, because we're all aware how different those experiences may be. While I have never in my life lost a diabetic friend, I can not imagine what terror would come from being a parent of a teenager who's lost multiple friends due to this illness.
4
I just want to point out that I’ve been seeing a lot more anger from T1s--and I don't exempt myself--in comment threads on diabetes-related articles. It’s largely due to the fact that, as the media attempt to educate the public about the epidemic upsurge in T2, they seem to be increasing the misunderstanding of T1, using the word “diabetes” as if it were a synonym for T2. The frustrating part isn’t the ignorance, but the increasing number of people who think they “know” things about "diabetes" that are in fact totally incorrect about T1. Grace herself voices some of that frustration in the film (right on kiddo!).
But I note that the tone here is in marked contrast to what I've experienced on diabetic community forums, which don’t lack for strong opinions but are generally very supportive and understanding of nuances and differences in how people experience and treat T1. With that in mind I just wanted to say, maybe we could ease up on the hypervigilance a little bit?
But I note that the tone here is in marked contrast to what I've experienced on diabetic community forums, which don’t lack for strong opinions but are generally very supportive and understanding of nuances and differences in how people experience and treat T1. With that in mind I just wanted to say, maybe we could ease up on the hypervigilance a little bit?
2
The difference in tone right here with this article and film has nothing to do with being less supportive of how others experience Tyoe 1. Someone made a film about Type 1 and many of us think the film is problematic. Wait and see how well it is received on the Type 1 forums you refer to.
1
I have a father with Type 2. Watching this video was eye-opening. Grace is such a normal, beautiful young woman and her mother reminds me of many mothers I have known - but once I internalized the danger and work they have to endure just to keep her safe and healthy - I now see Type 1 Diabetes much differently. I understand the strong need for a artificial pancreas to be developed. Thank you for creating this video to Grace and her mother for sharing the hardship they are having to go through. I hope you at the New York Times will create another piece about Grace and her family later in her life as she goes out on her own to manage this herself.
3
I find it telling that, generally, the commenters here who find this film to be over the top and misleading are those who have Type 1 themselves or are the parents of children with Type 1. The folks who admire the film and criticize other commenters for their lack of compassion, generally speaking, are those who don't have Type 1 diabetes, and/or are not the parent of a child or teen with Type 1. Think about it.
Having been there, starting with a 26 month-old, I wish this family the best, and the best would be a different, more supportive, more knowledgeable pediatric endocrinologist, and some serious time spent with the website Children With Diabetes, especially on its chatrooms for parents.
I felt lost and desperate at first, too, but the experienced parents on that website empowered me, as did a change from a judgmental ped-endo to a kind and supportive one. Many of us have children with completely dead pancreases. It does not have to be as dire as depicted in this film.
Having been there, starting with a 26 month-old, I wish this family the best, and the best would be a different, more supportive, more knowledgeable pediatric endocrinologist, and some serious time spent with the website Children With Diabetes, especially on its chatrooms for parents.
I felt lost and desperate at first, too, but the experienced parents on that website empowered me, as did a change from a judgmental ped-endo to a kind and supportive one. Many of us have children with completely dead pancreases. It does not have to be as dire as depicted in this film.
6
Pretty discouraged by some of the stupidity I've read here. This is a really cool film- the director wasn't trying to generalize T1D, he was trying to tell this family's story because as a filmmaker, he was moved by it. He did it beautifully. Furthermore, the film is vague about T1D and specific about this family's experience. So everyone with a comment about the "inaccuracy" of the film is simply not grasping it's intent and being a bit special. Chill out.
4
I have had Type I for 42 plus years. God knows I wish this family and Grace well, but I can't feel that something is askew here. The equipment on the counter is enough for weeks and weeks, and I can't help but wonder if the hyper-care is a result of the diabetes being overtreated with too much insulin. This all seems a bit much . . . .
2
It is scary to a parent to hear that by not keeping your child's blood sugar in control you might be dooming them to blindness, kidney failure and amputations later in life. They are doing the best they can now to protect their kid's future, not "too much insulin". I always thought that those consequences were played up until I started going to a type 1 diabetes group where two of the girls (in their 30s) had kidney failure from poor decisions they made as teenagers.
I am another T1 (29 years) that feels the need to pile on here. My biggest issue with T1 is the incredible ignorance in the "healthy" population. Thanks for increasing the ignorance!
In my youth, many people thought I was an invalid (both mental and physical) because I have diabetes. Many kids at my high school thought my T1 was the funniest thing they had ever heard of. "Hey Mike. Want a ding dong? Oh that's right. You'll go blind if you eat it."
I live a great life. When you are presented with something like this, you have a choice to make. You either choose to manage the disease and make the best of your life or you choose to become a victim. This film does not show me nearly enough, but it sure looks like they chose to be victims.
If I could magically cure myself, I most certainly would. But I would only cure myself right now. Challenges such as this make you learn about yourself, as well as the people around you. You find out who your real friends are and just what you are capable of overcoming.
In my youth, many people thought I was an invalid (both mental and physical) because I have diabetes. Many kids at my high school thought my T1 was the funniest thing they had ever heard of. "Hey Mike. Want a ding dong? Oh that's right. You'll go blind if you eat it."
I live a great life. When you are presented with something like this, you have a choice to make. You either choose to manage the disease and make the best of your life or you choose to become a victim. This film does not show me nearly enough, but it sure looks like they chose to be victims.
If I could magically cure myself, I most certainly would. But I would only cure myself right now. Challenges such as this make you learn about yourself, as well as the people around you. You find out who your real friends are and just what you are capable of overcoming.
8
So while I am seeing that most people think how the mother treats diabetes is ridiculous, I am a teen T1D myself, and the documentary is fairly accurate. Every night, my parents do check my blood glucose, and I do have to check and deal with everything every day. The mother and daughter tell a true story. Like the mom says, I am trying to be independent, just am not quite there yet. There is still work to be done, and the checking every fifteen minutes sometimes, the daily description is fairly accurate. Maybe when you are older and independent, you forget what teen years are like, but as a teen myself, I think the story told is a true one, of a parent trying to keep a kid alive. I am not even a "brittle" diabetic, and this still feels true.
13
Diabetes is not cancer! Sure we can die, but so can any other Joe Schmoe off the street. I am a type 1 and I am exactly this girl's age, however, of all the diabetics I have ever met, none has died. I do not think that Diabetes can kill me. This mom should not be saying, "Oh she could die at any time!" she should be saying, "I'm going to be a good mom and teach her how to take care of herself so she does not die." This is a beautiful example of Baron Munchausen by proxy syndrome. They seem to love the attention.
Grace, all I can say to you is, keep the dog, learn how to take care of yourself, and try to not be so dependent. Just because you can die, doesn't mean you should sit around and let people tell you how sorry they are!
Grace, all I can say to you is, keep the dog, learn how to take care of yourself, and try to not be so dependent. Just because you can die, doesn't mean you should sit around and let people tell you how sorry they are!
5
In the 50s and 60s Type I diabetes was sometimes a dark family secret. This was so in my family when a close relative developed Type1 diabetes. Luckily there were a few people that knew because one time when I was with this relative he went into insulin shock. Can you imagine if this occurred where no one knew about his diabetes and therefore would recognize the signs and would know what to do? I am glad people, as seen from these comments, are more out in the open about their diabetes.
My daughter goes to the same diabetes camp as Grace. One year my daughter was bunk mates with the sweet young lady who passed in May. I will admit that seeing another family lose their child to the same disease my child has is scary and has made me more hyper vigilant. Puberty has been tough for us too. I used to run my daughter high at night but we could not keep doing that. Now that we are in a normal range my daughter can not feel her lows. Everyone is different, you can't assume that everyone is affected the same by diabetes or any other chronic condition. Some diabetics will live a short life and some will live a long happy life. There are so many factors! I believe this video was made to show the bad side of diabetes. People need to see the bad side sometimes in order for a solution to be found. We wouldn't have CGMs, pumps or even synthetic insulin today if the negative side of type1 wasn't presented. We need to make things better for future generations. I applaud this family for sharing THIER story with us. Maybe some of you don't experience the bad side, maybe some if you feel comfortable having diabetes. Please don't assume we share your experience. Let's find a cure!
19
"I used to run my daughter high at night but we could not keep doing that. Now that we are in a normal range my daughter can not feel her lows."
Well, if she could sense her low blood sugars before, why then let her run high blood sugars at night? Low blood sugar will definitely wake a Type 1 up in time to treat it or ask for help. This doesn't sound right at all. Fear of insulin reactions should not prevent parents from trying to achieve the best control possible. Sorry but the doctor will tell you the same thing.
Well, if she could sense her low blood sugars before, why then let her run high blood sugars at night? Low blood sugar will definitely wake a Type 1 up in time to treat it or ask for help. This doesn't sound right at all. Fear of insulin reactions should not prevent parents from trying to achieve the best control possible. Sorry but the doctor will tell you the same thing.
I let them run high at night because we did not have a CGM and although Lantus is not supposed to peak, it does. Lantus was an unpredictable long acting insulin for us. Most diabetics would be surprised if they saw their sugar trends through the night. Sometimes your lows will make you high by morning (glucose dumping by liver due to bodies release of glucagon ) or it could be Dawn Phenomenon or other factors making you high. What if you assume the wrong thing and treat with more insulin instead when you really should decrease. Now add a pump to the mix. My childs pump (we just switched 6 months ago) will not stop pumping rapid acting insulin when she is low. We also make adjustments In 2 hour increments. We have been instructed by the endo to check every two hours when we make adjustments. With a hormonal teen girl we make a lot of adjustments. We are not supposed to rely on the CGM for those 2 hour checks but it helps me see trends. The endo wants a 6% A1C so our goal blood sugar is around 110. I have watched my daughter drop from 110 to 60 in ten minutes.
1
Not all type 1s will wake up to a low. There are plenty of people who do not.
2
I have been a Diabetic for 52 years, without any complications. I am an RN, with 3 college degrees, and a Certified Diabetic Educator, I became an Educator because I saw patients who were uninformed and parents who were over protective. This is their life, let them learn everything they can about Diabetes. With knowledge, wisdom and guidance they will know how to live life successfully. I taught kids as young as 4 and as old as 94, to care for their own Diabetes. With her mother doing everything, she never will leave for college, marry or even spend the night away from home, EVER! And if she does leave for college she will do everything to rebel against her mother, as in not taking her meds or eating wrong. A parents role is to teach their children to be independent, able to take on all odds. I pray that this mom will back off, supply her daughter with knowledge and let her enjoy life. If I can be of help, please let me know.
2
"... she will never leave for college she will do everything to rebel against her mother, as in not taking her meds or eating wrong."
Brenda McGowan, do have a crystal ball? How do know that this is the way that Grace will respond to the care she receives now? Grace is a student in my World History class in a private school in North Texas. She attends a full day of school without any of her family in attendance ("hovering"), with the exception of Jackie, her service dog. While Grace is at school, she takes care of her medical needs herself, unless she has a serious medical emergency. She is already learning a measure of independence, and is dealing with a serious chronic disease with good humor, a maturity beyond her 15 years and a profound sense of what is important in life. As is shown in the film, Grace faces life with a smile. She is a remarkable young woman.
Brenda McGowan, do have a crystal ball? How do know that this is the way that Grace will respond to the care she receives now? Grace is a student in my World History class in a private school in North Texas. She attends a full day of school without any of her family in attendance ("hovering"), with the exception of Jackie, her service dog. While Grace is at school, she takes care of her medical needs herself, unless she has a serious medical emergency. She is already learning a measure of independence, and is dealing with a serious chronic disease with good humor, a maturity beyond her 15 years and a profound sense of what is important in life. As is shown in the film, Grace faces life with a smile. She is a remarkable young woman.
4
empathy people, please. this is a film about one family and their particular case. guess what-- sometimes two people with the same level and type of cancer have 2 different outcomes-- that's the mystery of life and disease. It is not a judgement on the "resilience" of one person versus another, and people need to lighten up on ths family..
3
We are the parents of Grace, and the family featured in Midnight, Three, and Six. It would require a great deal of space to respond adequately to all of the comments being generated by the film, especially those of a critical nature. The following remarks are, regrettably, very brief.
1. Type 1 diabetics live and operate on a broad spectrum of conditions, from very stable and uncomplicated to unstable, 'brittle', and more complicated. An individual's place on this spectrum can be fairly stable for long periods, or very changeable. There is very little room for dogmatic, all-inclusive explanations about how this plays out in real life.
2. There is considerable confusion re T1D among the general populace, particularly re it's distinction from T2D, and the very real difficulties and dangers for children/adolescents with T1D.
3. The film represents a real (though edited and distilled) peak into our life with a T1D child. It isn't propaganda, but we are interested in fundraising for research & treatment re to T1D; so...do we want to stir the waters and get people's attention? YES!
4. We know all about the CGMS. We chose not to use this great technology because a) we didn't want our child to be attached to another invasive device, b) we could accomplish the same without it, and c) we wanted Grace to get accustomed to a more 'manual' method. We have the flex and family support that allows this to work well. Grace maintains an excellent A1c, works, volunteers, and seems HAPPY!
1. Type 1 diabetics live and operate on a broad spectrum of conditions, from very stable and uncomplicated to unstable, 'brittle', and more complicated. An individual's place on this spectrum can be fairly stable for long periods, or very changeable. There is very little room for dogmatic, all-inclusive explanations about how this plays out in real life.
2. There is considerable confusion re T1D among the general populace, particularly re it's distinction from T2D, and the very real difficulties and dangers for children/adolescents with T1D.
3. The film represents a real (though edited and distilled) peak into our life with a T1D child. It isn't propaganda, but we are interested in fundraising for research & treatment re to T1D; so...do we want to stir the waters and get people's attention? YES!
4. We know all about the CGMS. We chose not to use this great technology because a) we didn't want our child to be attached to another invasive device, b) we could accomplish the same without it, and c) we wanted Grace to get accustomed to a more 'manual' method. We have the flex and family support that allows this to work well. Grace maintains an excellent A1c, works, volunteers, and seems HAPPY!
14
Thanks SO much for weighing in Dennis & Patricia. I think the CGM bit was the most confusing to a lot of us T1s. I'd just weigh in that as an adult pump user (switched from MDI about 2 yrs ago) I personally have mixed feelings about using a CGM and have not yet made that move. It can be helpful, obviously, and a lot of people swear by them, but the schedule is different from that of your pump, it represents another set of bits and pieces to keep track of, and is another layer of stuff to manage. I can totally sympathize with Grace feeling like it isn't something she wants to have to deal with. Best wishes to all of you and a huge thanks, again, for taking the risk of putting yourself out there, both in the film and in responding to these comments!
2
Not propaganda? In my opinion, it is exactly the propaganda aspect of this film that bothers the Type 1s and family members posting here. The way you raise your daughter, as a diabetic or otherwise, is your business. But once you make a publicly-released film purporting to represent families dealing with Tyoe 1 -- the inevitable assumption since the film never once makes the point that this is an exceptional case -- you are on very shaky ground.
We all support research for a cure and the artificial pancreas, but helping to create even more misconceptions among the general public in order to aid fundraising is just plain manipulative, unethical and wrong. You have stirred the waters alright, but in the wrong direction. What you are experiencing here is the Type 1 community attempting to put things right.
We all support research for a cure and the artificial pancreas, but helping to create even more misconceptions among the general public in order to aid fundraising is just plain manipulative, unethical and wrong. You have stirred the waters alright, but in the wrong direction. What you are experiencing here is the Type 1 community attempting to put things right.
2
"...since the film never once makes the point that this is an exceptional case.."
Actually, David H., it does. Mrs. Chamberlain states that Grace's condition is "brittle", meaning she is not the typical T1 and requires extraordinary care (more stringent than the "typical" T1.)
Actually, David H., it does. Mrs. Chamberlain states that Grace's condition is "brittle", meaning she is not the typical T1 and requires extraordinary care (more stringent than the "typical" T1.)
1
This is not at all representative of life as a Type 1 diabetic. My daughter was diagnosed in 2005 at the age of not quite 5. We never woke her in the middle of the night to be tested because as long as you go to bed with a normal blood sugar, and have not exercised more than usual, you will be fine. Death from a low blood sugar is extremely rare and I do not believe that this girl has had 4 friends die from diabetic complications. My daughter has been treated at Yale and I'm sure they'd be horrified by this representation of this disease. Does diabetes suck and require lots of work, you betcha. But to portray it in this light is completely wrong and infuriates me!
1
We check our 5-yr-old Type 1 at least once in the middle of every night. Yes, as you say, death is very rare, but that is NOT the same thing as saying that a parent can assume a T1 child will be "fine" as long as he goes to bed with a normal blood sugar. Even holding exercise and food constant, we find that our child pretty regularly experiences unexpected extreme overnight lows and highs, both of which are detrimental to long-term health and cognitive development. That's why we're there in the middle of the night with either the carbs or insulin she needs to get her back into range. We have CGM data to confirm these unpredictable spikes and dips. Type 1 is simply not a disease with givens.
1
"..I do not believe that this girl has had 4 friends die form diabetic complications."
So not only are we denigrating this family for the way that they are dealing with a serious chronic disease but now we doubt their veracity? I'd say some people's comments are uncivil and necessary.
So not only are we denigrating this family for the way that they are dealing with a serious chronic disease but now we doubt their veracity? I'd say some people's comments are uncivil and necessary.
You clearly haven't been exposed to other diabetics, if your view is so narrow that you think people don't actually die of this disease. It's ignorant to ignore that there is a side of diabetes that does harm and does kill people. God bless your family that you haven't had to witness this first hand, but to put down another families experiences is terrible of you. We, as diabetics and the families of diabetics, are all in this together, and to be so hostile is almost childish. I'm sure the doctors at Yale know very well what this disease is capable of. No part of this video is wrong, factually or emotionally. I hope you can learn to change your anger into compassion for the people who are going exactly what you're going through, and for the families who will soon be facing this journey.
1
As a mom of a 9-year old boy with type 1 diabetes (t1d), I very much empathize with the Champlain's story - and wish Grace all the best in life. This film does help portray the burden of managing type 1 diabetes -- but I worry that presenting diabetes as a life-threatening disease to my son may do more harm than good. Yes, t1d is a chronic disease that can turn acute very quickly, But, I want my son to know that t1d can and must be managed so that he can enjoy the life he wants. I want to inspire him to reach for great heights, not encourage him to fear the worst. To that end, he was recently mesmerized by a documentary my colleague made about his 365-day journey rock climbing (with t1d). My son was completely awe-struck by the visuals, and connected with the story. Raising awareness for t1d is always good, but when it can be framed in a story of hope and individual achievement--all the better. https://myglu.org/articles/livingvertical-project365-a-film-about-climbi...
8
I can sympathize with the fear that Type I Diabetes induces in parents. Indeed, experiencing (and witnessing) insulin shock is traumatic. Insulin can be both a life-saving and a life-threatening drug, but it can be managed, particularly with the help of new technologies like continuous glucose monitoring. Grace seems to be caught between annoyance at her mother's monitoring and resignation to a life of fear. Given the chance, she can take control of her life and her health. I have lived with T1D for 35 years, and I have a rich, active, and healthy life. T1D is just a part of it, integrated into my life like many other daily routines. I hope that both Grace and her mother can find some balance in managing the disease.
4
I've got type 1 for 42 years. I'll let you do the math. I thank God for insulin pumps (17+ years) and my Dexcom CGM (6+), without these life would be a lot harder.
Like many others I've had lots of fun opportunities and adventures despite the type 1. I think the pump and CGM combination makes it all a lot easier.
Grace I hope it gets easier, Patricia God bless your efforts. Do look into the Dexcom or the NightScout project, it might save you from waking up every few hours.
Like many others I've had lots of fun opportunities and adventures despite the type 1. I think the pump and CGM combination makes it all a lot easier.
Grace I hope it gets easier, Patricia God bless your efforts. Do look into the Dexcom or the NightScout project, it might save you from waking up every few hours.
1
I lived in the Dade County Children's Home for some of my teen years. My best friends Steve had Juvenile Diabetes and like this woman he was uncontrollable. On most days he needed 10-12 shots of U-100 and we were constantly checking his urine with PH strips. We got to keep candy and fruit in the room. Steve had been in a foster care institution run by Dade County, Parkwood. His Mother was an alcoholic and couldn't care for him. He became a behavior problem and ended up in Kendall with us incorrigibles. We were 16. His feet, legs and arms were covered sugar sores. He was nearly 6ft tall and weighed 110 lbs. He dealt with infections and neuropathy. He didn't make 18.
From the movie's description, it sounds like Grace is a brittle Type 1 diabetic. Brittle diabetics make up about 0.3% of total Type 1ers and are usually young women. Brittle diabetics have frequent and unpredictable episodes of hypoglycemia/ketoacidosis and their glucose levels are chronically instable. Brittle diabetics are resistent to most treatments, and while insulin pumps can improve quality of life and mitigate some of the risks, brittle diabetics have poorer prognosis and shortened life spans.
I'm not surprised with the preponderance of outraged Type 1ers on here saying that the mother is overracting or that the filmmaker is being overly dramatic. The fact is, this movie is an accurate representation of what life is like for a small percentage of Type 1ers, and it accentuates how important it is to support basic research on diabetes and support "curative" technologies like the artificial pancreas referenced here. Many people live with well-managed Type1 diabetes, but many people still do not respond well to the regimens being touted in the comments here.
I'm not surprised with the preponderance of outraged Type 1ers on here saying that the mother is overracting or that the filmmaker is being overly dramatic. The fact is, this movie is an accurate representation of what life is like for a small percentage of Type 1ers, and it accentuates how important it is to support basic research on diabetes and support "curative" technologies like the artificial pancreas referenced here. Many people live with well-managed Type1 diabetes, but many people still do not respond well to the regimens being touted in the comments here.
4
It's true that not ALL Type 1 Diabetics have as much trouble as Grace managing their blood sugar. My niece has Type 1, and her parents don't have to get up in the night. But even in the best cases, T1D requires constant careful management, potential long-term health consequences, and a lot of expense. JDRF, the Juvenile Diabetes Research Foundation, funds much of the research on Type 1 treatments and cures. If you feel like donating, I'm participating in the 2015 JDRF Ride to Cure, and here's my fundraising page: www2.jdrf.org/goto/cathyryan
1
Thank u, thank u, thank u…for this awesome, uplifting comment!
I'm the mom of a 16-yr-old Type 1 diabetic, diagnosed @ AGE 5.
This documentary sent chills through me.
Grateful to have your wise, mature input!
I'm the mom of a 16-yr-old Type 1 diabetic, diagnosed @ AGE 5.
This documentary sent chills through me.
Grateful to have your wise, mature input!
I was diagnosed as a Type 1 diabetic when I was 17 years old, 18 years ago. Looking back on my life, how has this disease changed me:
1) I was hoping to join the military and fly helicopters, but I couldn't do that.
2) I am incredibly conscious to always have health insurance.
3) Sometimes I can be a bit irritable, if my blood sugar levels are off and I don't realize it.
What have I done despite having this disease:
1) Been an athlete for my entire life (hiking, snowboarding, surfing, high school sports);
2) Started multiple businesses that continue to operate with great success;
3) Moved from the west coast to the east coast to attend college at 18 years old and later earned a graduate degree;
4) Had a varying career in public service, in places with innumerable challenges (specifically, disaster areas);
5) Got married to a wonderful woman and have the coolest six-month old daughter I could ever ask for.
My message to Patricia and Grace is simple: Don't let the worry drive your life. Living with this disease will absolutely get better. Patricia is right, kids with this disease have wisdom most kids don't. Use that wisdom, channel it, take advantage of it. Being in touch with your mortality during adolescence can be really valuable, Grace, helping you recognize that life cannot be taken for granted.
I'm glad I had this disease. I'd love to not have it. But I think a lot of what I am today and where I am today is because of the lessons I learned from having it.
1) I was hoping to join the military and fly helicopters, but I couldn't do that.
2) I am incredibly conscious to always have health insurance.
3) Sometimes I can be a bit irritable, if my blood sugar levels are off and I don't realize it.
What have I done despite having this disease:
1) Been an athlete for my entire life (hiking, snowboarding, surfing, high school sports);
2) Started multiple businesses that continue to operate with great success;
3) Moved from the west coast to the east coast to attend college at 18 years old and later earned a graduate degree;
4) Had a varying career in public service, in places with innumerable challenges (specifically, disaster areas);
5) Got married to a wonderful woman and have the coolest six-month old daughter I could ever ask for.
My message to Patricia and Grace is simple: Don't let the worry drive your life. Living with this disease will absolutely get better. Patricia is right, kids with this disease have wisdom most kids don't. Use that wisdom, channel it, take advantage of it. Being in touch with your mortality during adolescence can be really valuable, Grace, helping you recognize that life cannot be taken for granted.
I'm glad I had this disease. I'd love to not have it. But I think a lot of what I am today and where I am today is because of the lessons I learned from having it.
4
While the film definitely showed one the darkest aspects of T1, I don't think its fair to call it inaccurate. It is this family's story. No two T1 stories are identical.
My daughter, 14, has been living with T1 for 2 1/2 years, so we are still relative newcomers to this disease. But I have learned an awful lot in that time. My daughter does wear a CGM (and we use Nightscout), so I don't set alarms to check overnight anymore. However, I can tell you that it is rare that we get to sleep through the night without an alarm--either high or low. (And before anyone says we need to adjust basals--please, trust me when I say that I am on it. Her body is volatile. Sunday night was relatively calm, but last night I struggled to keep her under 300. It can change from night to night. I adjust when a pattern is established over say 3 nights or so).
I am glad to hear that managing this disease is relatively easy for so many T1s out there, but in my house it seems relentless. Some days are better than others, but every day it requires attention, thought and planning. And with the (seemingly endless) list of things that can affect blood glucose, it is often maddening (and for me, as her mother, it can be soul crushing).
My daughter lives a very normal teen life, but its work to achieve that. Constant, endless work.
My daughter, 14, has been living with T1 for 2 1/2 years, so we are still relative newcomers to this disease. But I have learned an awful lot in that time. My daughter does wear a CGM (and we use Nightscout), so I don't set alarms to check overnight anymore. However, I can tell you that it is rare that we get to sleep through the night without an alarm--either high or low. (And before anyone says we need to adjust basals--please, trust me when I say that I am on it. Her body is volatile. Sunday night was relatively calm, but last night I struggled to keep her under 300. It can change from night to night. I adjust when a pattern is established over say 3 nights or so).
I am glad to hear that managing this disease is relatively easy for so many T1s out there, but in my house it seems relentless. Some days are better than others, but every day it requires attention, thought and planning. And with the (seemingly endless) list of things that can affect blood glucose, it is often maddening (and for me, as her mother, it can be soul crushing).
My daughter lives a very normal teen life, but its work to achieve that. Constant, endless work.
16
Thanks for this! I think that's about right. T1 kids can have a normal life, and most do, but it requires a LOT of work by both the child and the parents. And, from our experience, overnight monitoring is an absolutely essential component of that workload, to avoid both unacceptable prolonged highs and lows.
I love, love, love your point about how flippant other people's anonymous advice on comment boards can be: After we're up all night treating a stubborn high or low, we then spend inordinate time over the next few days doing after-action analysis to figure out what went wrong and how to address it, often with a CDE's input, even knowing that we will never hit on a perfect formula that will guarantee stable overnight levels for very long.
I love, love, love your point about how flippant other people's anonymous advice on comment boards can be: After we're up all night treating a stubborn high or low, we then spend inordinate time over the next few days doing after-action analysis to figure out what went wrong and how to address it, often with a CDE's input, even knowing that we will never hit on a perfect formula that will guarantee stable overnight levels for very long.
1
I read all the comments that have some variation of “just get a CGM” and I find them very discouraging. Perhaps these commenters don’t know that a CGM is expensive – about 25% - 35% the cost of a 2 bedroom apartment in my area – and not necessarily covered by insurance. I’m keenly aware of it since my request for a CGM was denied last October. My insurance company explained that “based on national Guidelines for [CGM] Devices” I am ineligible for CGM because I have not had “recurrent episodes of severe hypoglycemia (… (blood glucose less than 50 mg/dL) with unawareness that required assistance … to administer oral carbohydrate, glucagon, or other resuscitative actions)…. Long-term use of [CGM] is considered experimental and investigational for all other indications.” Apparently simple interventions sometimes run up against formidable obstacles. I don’t know why Grace appears not to use a CGM, but chances are it’s not for lack of awareness or motivation.
I also find discouraging the comments that “I have Type 1 and it’s not that hard.” Even more so the ones that say it’s no problem at all. I wonder whether they would turn down a cure if it existed. Diabetes makes life more difficult than life without it. I know because I remember what life was like before I got diabetes in high school 18 years ago. Some people, through luck and diligence have better outcomes than others. I’m glad to be a lucky one, and I’m glad Grace is willing to share her struggles.
I also find discouraging the comments that “I have Type 1 and it’s not that hard.” Even more so the ones that say it’s no problem at all. I wonder whether they would turn down a cure if it existed. Diabetes makes life more difficult than life without it. I know because I remember what life was like before I got diabetes in high school 18 years ago. Some people, through luck and diligence have better outcomes than others. I’m glad to be a lucky one, and I’m glad Grace is willing to share her struggles.
5
I keep seeing comments about how expensive CGM's are. You know what else is expensive and not covered by insurance? Their 25K diabetes alert dog. At least a CGM will do its job at night (apparently the dog doesn't) .
2
I was saddened and puzzled that so many of your friends with type 1 diabetes died suddenly (and hope against hope that this accurate and was not overstated). This is certainly not the experience of the medical community. The peer reviewed medical literature on individuals with type 1 diabetes found "dead in bed" suggests that the incidence is actually quite rare, likely less than one in several thousand per year. Indeed, in all my years of practice, I have never experienced this with the patient although I have heard through the grapevine that it did occur to one very noncompliant patient many years later. It is quite unfortunate that you, and those around you, feel that death looms over your head because that is simply not so.
1
As the readers have noted, you failed to mention whether you used continuous glucose monitoring (CGM). I am certain that you have heard of this technology and I suspect that you have possibly tried it. If you haven't, for your own sake, please do so. If you have, perhaps you found difficulties with it. Many of my patients have had issues with the tape, the lack of "real estate" for insertion of two sites or difficulties getting used to the technology. Keep trying! I counsel my patients that it may take them a full six months to become entirely comfortable with it. Turn to your endocrinologist or, better yet, your diabetes educator for assistance and guidance. There is an abundance of literature that supports this technology in improving your control and making your life safer.I am glad that your guardian dog has made such a difference in your life. Several of my patients have obtained such a dog, but for most of them it did not work. There is not an abundance of literature that supports the benefit of guardian dogs. In all likelihood, a continuous glucose monitor would be of more benefit to you.
1
Dear Grace, (part 1)
As a pediatric endocrinologist in practice for the past quarter of a century, I have had the opportunity and privilege to provide care for, and learn from, thousands of "heroes," like yourself, children, adolescents and young adults with type 1 diabetes mellitus. I was therefore very pleased and excited to see that the New York Times was featuring a video about you and looked forward to watching it late last night when I finally had the time. I was somewhat disappointed and disheartened by the video. Firstly, I was sad for you in that you are having such a difficult time with your diabetes. I was also concerned that it misrepresented somewhat the typical experience of living with diabetes. No doubt, there is a wide spectrum with some patients having a relatively easy time of it and others, despite valiant effort, having great difficulties with diabetes control. That seems to be the case with you in that you were using an injection of long-acting insulin as well as a pump. The hope and the goal of practitioners within the diabetes community is that all of our patients will have a full and normal life with a normal lifespan.
(to be continued)
As a pediatric endocrinologist in practice for the past quarter of a century, I have had the opportunity and privilege to provide care for, and learn from, thousands of "heroes," like yourself, children, adolescents and young adults with type 1 diabetes mellitus. I was therefore very pleased and excited to see that the New York Times was featuring a video about you and looked forward to watching it late last night when I finally had the time. I was somewhat disappointed and disheartened by the video. Firstly, I was sad for you in that you are having such a difficult time with your diabetes. I was also concerned that it misrepresented somewhat the typical experience of living with diabetes. No doubt, there is a wide spectrum with some patients having a relatively easy time of it and others, despite valiant effort, having great difficulties with diabetes control. That seems to be the case with you in that you were using an injection of long-acting insulin as well as a pump. The hope and the goal of practitioners within the diabetes community is that all of our patients will have a full and normal life with a normal lifespan.
(to be continued)
1
I strongly object to this documentary. Type I diabetes is not a life threatening disease once you get used to managing it properly. Putting all your medical supplies on the Kitchen counter and the cat in between just scares people who have no idea about our condition. It would be much wiser to educate the public about diabetes. This is a comment from a 68 year old who has been diagnosed 4 years ago and who is sick and tired of ignorant people making stupid comments.
1
I have read the first 40 comments on this story -- many of them from Type 1s like myself -- and find most of the criticisms valid. One thing I'd like to point out is that this girl not only has "brittle" diabetes (hard to control), but apparently a bad case of "diabetic unawareness" that makes detecting low blood sugars very difficult.
Diabetic unawareness usually takes a long time to happen in Type 1s, if it happens at all, so this girl is especially unlucky. Frankly, I think this film would have been more effective (and less irritating to some of us) if the point had been made that this is a particularly severe case of Type 1 diabetes, thereby making the need for the artificial pancreas just that much more urgent.
I'll add one more criticism of the film: the focus on the challenges and dangers inherent in diabetes management (typically nothing like what is portrayed here) instead of the real damage done by the disease itself. That is, the complications and premature deaths.
If they had to show a young person to evoke greater sympathy and maximize fundraising, how about the twenty-something who has had diabetes for 15 years and is already on dialysis, facing death in five years or less if no kidney is available?
Diabetic unawareness usually takes a long time to happen in Type 1s, if it happens at all, so this girl is especially unlucky. Frankly, I think this film would have been more effective (and less irritating to some of us) if the point had been made that this is a particularly severe case of Type 1 diabetes, thereby making the need for the artificial pancreas just that much more urgent.
I'll add one more criticism of the film: the focus on the challenges and dangers inherent in diabetes management (typically nothing like what is portrayed here) instead of the real damage done by the disease itself. That is, the complications and premature deaths.
If they had to show a young person to evoke greater sympathy and maximize fundraising, how about the twenty-something who has had diabetes for 15 years and is already on dialysis, facing death in five years or less if no kidney is available?
1
I've seen the horrors of this disease as my infant son was diagnosed & almost died from KA at 20 mths. I've received calls from friends who's friends child didn't wake up that day. I've watched my son with a 60 BG eat his weight in carbs & 15 mins later with no logical reasoning be on the verge of passing out with a lower BG of 25. I've been up all hours of the night because he had 4 units of insulin on board due to a malfunctioned pump & can't sleep because sometimes over 3 units causes his BGs to plummet. I've been woken up out of a dead sleep at 2am panicked that I didn't hear my alarm and run to find him asleep with a bg of 40! Guilt stricken thoughts...what if didn't wake up? I've watched my 2yr old get so low he was combative, spitting up juice & refusing to eat, I had to pin him down and pour SUGAR in his mouth his bg was 17! I'm THAT mom who doesn't sleep well and probably never will. Everyone can't afford hundreds of dollars in CGM supplies & ins co's don't always approve it, & having a CGM doesn't magically eliminate the need to test in the middle of the night or low blood sugars at 4am. Not every parent has someone to share the load or help pay cost. Children die. Some before parents know the child has a disease, some after 1 or 2yrs of diagnosis, some after 20 years. Either way lives are lost. I've heard my child pray for God to heal him. I've heard the why mes? & the I wish I didn't have stupid diabetes cries, It's not always easy.
4
Afrezza, a new and revolutionary prandial insulin, therapy will be launching any day. This product more closely mimics the natural insulin cycle in the body, reducing the number of hypo/hyperglycemia events experienced with traditional insulin products. Patients that participated in the trials raved about how much their glucose levels improved. There has been a definite need for better diabetes care products. It is exciting to see companies like MannKind and Medtronic are introducing novel therapies, such as Afrezza and the artificial pancreas, that will make managing diabetes safer and easier for the patient.
I'm a little put off by the "woe is me, I've been T1 for XX years and she's doing too much, she just needs to deal with it" attitude of the comments here. I also have been T1 for over 20 years, and thanks to an insulin pump and learned knowledge of what works and what doesn't it has very little negative impact on my life. Most people are shocked when I finally tell them- the most common reason they find out is when they ask if I want a drink and I say no, I can't. But my case (and many of the other posters') may be different from this girl's. Just take a look at the numbers on her sheet, they're all over the place EVEN WITH the careful oversight the family has. Let's give them credit for doing the best for their daughter, like we all would. And let's hope her closing remark holds true.
2
I’m glad I didn’t watch this before I was diagnosed with type 1 at 15. I probably would have hung myself. This makes type 1 diabetes sound a lot worse than it is.
There’s a lot I identify with here — getting diagnosed as a teenager made me think about death a lot earlier than most people do. I'm sure my parents worried about me a lot more than they ever let on. But there was a kind of myopia playing itself out there. And the filmmaker here has taken their myopia — which, to be clear, I totally empathize with — at face value. And I think that might do more harm than good.
This would be a much better documentary if it also looked at someone who was diagnosed at Grace’s age, and has since gone on to live a happy, independent life. The worst case scenarios that Grace’s Mom imagines are real, and I identify with her fear; but nevertheless, they are far from the norm: a happy, productive life that requires a little more vigilance and will power than most people have to conjure (and better health insurance than a lot of people have), but nevertheless, by all means normal.
Also: Mom/Dad, please do whatever you have to do to get Grace on a CGM, and go back to getting a good night sleep.
There’s a lot I identify with here — getting diagnosed as a teenager made me think about death a lot earlier than most people do. I'm sure my parents worried about me a lot more than they ever let on. But there was a kind of myopia playing itself out there. And the filmmaker here has taken their myopia — which, to be clear, I totally empathize with — at face value. And I think that might do more harm than good.
This would be a much better documentary if it also looked at someone who was diagnosed at Grace’s age, and has since gone on to live a happy, independent life. The worst case scenarios that Grace’s Mom imagines are real, and I identify with her fear; but nevertheless, they are far from the norm: a happy, productive life that requires a little more vigilance and will power than most people have to conjure (and better health insurance than a lot of people have), but nevertheless, by all means normal.
Also: Mom/Dad, please do whatever you have to do to get Grace on a CGM, and go back to getting a good night sleep.
1
I have been Type 1 for 32 years.
I eat normal foods.
I partake in normal activities.
I have lived alone for 20 years.
I take 4 or more shots of insulin per day.
I poke a finger and take a blood test 4 or more times per day.
I have ZERO KNOWN complications from this disorder.
I feel very lucky to have this disorder.
While this is incurable it is totally fixable. I'm living proof.
This is NOT a terrible condition to have.
This IS a terrible film. Hated it from the first minute.
There are so many factual errors and mis-interpretstions of things it was sickening. Hopefully this will be seen by very few people because this is a very poor portrayal of the condition called diabetes.
Puberty is the toughest time to manage this condition. The worst thing you can do is what the mother is doing- trying to micro manage. As a teen, let the blood sugers hover a little high. Don't try and treat the blood sugar reading on the meter this instant. You will be a dog chasing it's own tail. Make small changes. Treat low sugars with an iron fist. Treat high sugars with kid gloves.
This is one time (puberty) when being "high" is OK!
By the way my normal lifestyle with normal foods (if you close your eyes during my 4 shots) nets me a HbA1C of 7.6 most months. No one knows I'm diabetic outside my family.
I eat normal foods.
I partake in normal activities.
I have lived alone for 20 years.
I take 4 or more shots of insulin per day.
I poke a finger and take a blood test 4 or more times per day.
I have ZERO KNOWN complications from this disorder.
I feel very lucky to have this disorder.
While this is incurable it is totally fixable. I'm living proof.
This is NOT a terrible condition to have.
This IS a terrible film. Hated it from the first minute.
There are so many factual errors and mis-interpretstions of things it was sickening. Hopefully this will be seen by very few people because this is a very poor portrayal of the condition called diabetes.
Puberty is the toughest time to manage this condition. The worst thing you can do is what the mother is doing- trying to micro manage. As a teen, let the blood sugers hover a little high. Don't try and treat the blood sugar reading on the meter this instant. You will be a dog chasing it's own tail. Make small changes. Treat low sugars with an iron fist. Treat high sugars with kid gloves.
This is one time (puberty) when being "high" is OK!
By the way my normal lifestyle with normal foods (if you close your eyes during my 4 shots) nets me a HbA1C of 7.6 most months. No one knows I'm diabetic outside my family.
26
You're wrong.
There are Type 1 diabetics whose condition remains unstable for a long time, who have unpredictable lows, who remain in this state of requiring near-constant surveillance for a while.
I think a CGM (continuous glucose monitor) would help this family tremendously.
And by the way, I am the mother of an 18-year-old Type 1, diagnosed 9.5 years ago.
Personally, my family is invested (emotionally, primarily) in a cure: more high-priced fancy treatments, please.
There are Type 1 diabetics whose condition remains unstable for a long time, who have unpredictable lows, who remain in this state of requiring near-constant surveillance for a while.
I think a CGM (continuous glucose monitor) would help this family tremendously.
And by the way, I am the mother of an 18-year-old Type 1, diagnosed 9.5 years ago.
Personally, my family is invested (emotionally, primarily) in a cure: more high-priced fancy treatments, please.
1
Her diabetes clearly isn't the same as yours.
4
Agreed! I've been a Type I for 26 years, diagnosed at age 10 and have had ZERO complications as well. Sure, it's a roller coaster at times, but I'm tired of seeing negative articles like this. I know, this is just one person, but I live a completely normal life. I never understood those who don't. I'm on an insulin pump and a CGM - miracle technology. An artificial pancreas is not the answer and why is she trying to raise money for it...I'd like one as well but you don't see me going around asking people for money. I eat what I want, I exercise, I have fun, went to college, etc. etc....A1c has been a cool 6.1 for the past 8 years. Type I Diabetes is not a death sentence!
1
39 year old type 1 diabetic.
Diagnosed when I was 10.
Insulin pump.
Continuous glucose monitor.
Skateboarder.
Musician.
Artist.
Surgeon.
Don't let it get you down, Grace.
Diabetes sucks, but it's just part of the price you & I have to pay to stick around.
It's worth it.
You can do it.
PLEASE don't let it hold you back.
It's not the end of the world, Patricia.
I know you're feeling overwhelmed - & that's ok - don't let it hold you back, either.
You can do it, too.
Love
- Jonny
Diagnosed when I was 10.
Insulin pump.
Continuous glucose monitor.
Skateboarder.
Musician.
Artist.
Surgeon.
Don't let it get you down, Grace.
Diabetes sucks, but it's just part of the price you & I have to pay to stick around.
It's worth it.
You can do it.
PLEASE don't let it hold you back.
It's not the end of the world, Patricia.
I know you're feeling overwhelmed - & that's ok - don't let it hold you back, either.
You can do it, too.
Love
- Jonny
44
Thank u, thank u, thank u…for this awesome, uplifting comment!
I'm the mom of a 16-yr-old Type 1 diabetic, diagnosed @ AGE 5.
This documentary sent chills through me.
Grateful to have your wise, mature, medical input!
I'm the mom of a 16-yr-old Type 1 diabetic, diagnosed @ AGE 5.
This documentary sent chills through me.
Grateful to have your wise, mature, medical input!
What a kind and inspiring response, Jonny. I hope my daughter's sentiments and desire to encourage others will be very much the same a few decades down the T1D road.
Thanks, Johnny. I am so saddened by the vitriol in the comments here. The film is not, as more than one person stated, a piece of propaganda. It is a human interest story from an independent filmmaker - that's all. Don't make it out to be something that it is not.
I appreciate your encouraging and positive comments.
Grace is a freshman level student in my World History class in a private school in North Texas. What you are not able to see in the film is Grace's regular day at school where she is independent (except for Jackie, her service dog) and carries on her day without the presence of any family members or medical personnel. She addresses her medical needs herself except for emergencies, which has occurred only once this academic year. She is an active, funny, charming, poised and intellectually bright young lady that exhibits a maturity well beyond her peers. She faces life with gusto and, by all appearances, is becoming more independent each day. She is a remarkable young woman.
Yes, Johnny. She can do it!
I appreciate your encouraging and positive comments.
Grace is a freshman level student in my World History class in a private school in North Texas. What you are not able to see in the film is Grace's regular day at school where she is independent (except for Jackie, her service dog) and carries on her day without the presence of any family members or medical personnel. She addresses her medical needs herself except for emergencies, which has occurred only once this academic year. She is an active, funny, charming, poised and intellectually bright young lady that exhibits a maturity well beyond her peers. She faces life with gusto and, by all appearances, is becoming more independent each day. She is a remarkable young woman.
Yes, Johnny. She can do it!
It seems to me that is unfortunate child is a particularly brittle type I diabetic. And to survive that is difficult, and I applaud her (and her parents') dedication. But my perspective, as a pediatrician, is that most kids with type I diabetes don't live this way.... Thank goodness.
I agree with the mom: there is hope. I agree with her that artificial pancreas technology is coming. And don't misjudge: EVERY type I diabetic has a tough, tough life -- but not THIS insane.
I agree with the mom: there is hope. I agree with her that artificial pancreas technology is coming. And don't misjudge: EVERY type I diabetic has a tough, tough life -- but not THIS insane.
15
What so many disparaging commenters fail to realize is that this Op-Doc is not meant to portray the typical situation of a family with a Type 1 diabetic adolescent, but rather the extraordinary stress and delicate balance of dealing with the care of an extraordinarily “brittle” diabetic, one whose glucose levels are unpredictably volatile. Her disease has progressed so far that her pancreas is “dead” (as her mother mentioned, and not figuratively at that). How do you know the family hasn’t unsuccessfully tried a CGM, or that doctors have ruled it out as not being sufficiently effective? Her situation seems to be analogous to someone with complete renal failure who must be dialyzed or successfully kidney-transplanted in order to be alive. My heart goes out to Grace and her family--but my scorn goes out to those strangers here who think that all Type 1 diabetes is equal and that what works for them or their kids works for everybody.
35
Hmm. I don't know whether she actually has any complications. The fear of hypoglycemia is definitely huge, which is understandable. I've never heard of knowing so many young teens who have died of severe hypo - "dead in bed" is very real, but it's unusual that Grace knew so many of them personally. That must also be very scary.
I would love to know if the family had tried CGM; they may not have access to it through their insurance. CGM today has improved substantially from years past; sometimes families tried it before and haven't tried it again, and I would highly recommend it (more for the parents actually!) if Grace is up for it and of course if they can afford it / have access.
I always think that type 1 diabetes is so much harder for parents than for children, and in this case that seems like it may be true.
It is disappointing to me when I see stigma surrounding type 2 - there seems to be an implication at the start like patients with type 2 somehow deserve it or could prevent all of it, etc - both type 1 and type 2 are super complicated and any comments that generalize about what patients should be doing or implications about how they could avoid their condition are sad to see. Diabetes is a vast continuum; recognizing what we share could be really constructive rather than implications that we are so different from one another. I get it that type 1 is different from type 2 - the fact that she seemed insulted that people thought that she was type 2 was sad to me.
I would love to know if the family had tried CGM; they may not have access to it through their insurance. CGM today has improved substantially from years past; sometimes families tried it before and haven't tried it again, and I would highly recommend it (more for the parents actually!) if Grace is up for it and of course if they can afford it / have access.
I always think that type 1 diabetes is so much harder for parents than for children, and in this case that seems like it may be true.
It is disappointing to me when I see stigma surrounding type 2 - there seems to be an implication at the start like patients with type 2 somehow deserve it or could prevent all of it, etc - both type 1 and type 2 are super complicated and any comments that generalize about what patients should be doing or implications about how they could avoid their condition are sad to see. Diabetes is a vast continuum; recognizing what we share could be really constructive rather than implications that we are so different from one another. I get it that type 1 is different from type 2 - the fact that she seemed insulted that people thought that she was type 2 was sad to me.
thank you Sandy for your comments. I hope these people feel some shame for their cruel rush to judgement. A sign of our times, I am afraid.
I'm so thankful to read the sane comments here by people with Type 1 and those who love them!
Does type 1 suck sometimes? You bet. Does it have to be the focus of your life? No. Not unless there's something terribly wrong with the way you manage your condition, or on some occasional circumstances, like illness/flu.
The family in this film is not the norm (I hope). As the parent of a kid with type 1, my heart breaks for this mom and her daughter. It doesn't have to be like this! As others have said, there are glucose monitoring devices that are, for the most part, incredibly accurate in alerting to dangerous levels. Today one of the two companies that make them, Dexcom, announced FDA approval for remote (via an iOS device) monitoring. There are professionals who can help them learn to adjust insulin and carbs so the poor girl isn't so out of control, if she really is
Almost everyone with type 1 has "volatile" blood glucose excursions. Using a synthetic hormone to adjust glucose levels that are affected by a maddening number of different things (types of food, weather, stress, hormones, activity, etc) is like tossing wet noodles at a moving target. However, that doesn't mean death is waiting at every turn. Yes, you must be vigilant and diabetes is always in the background, but it need not be the central focus in life. The fear, especially, is way out of proportion in this depiction.
Does type 1 suck sometimes? You bet. Does it have to be the focus of your life? No. Not unless there's something terribly wrong with the way you manage your condition, or on some occasional circumstances, like illness/flu.
The family in this film is not the norm (I hope). As the parent of a kid with type 1, my heart breaks for this mom and her daughter. It doesn't have to be like this! As others have said, there are glucose monitoring devices that are, for the most part, incredibly accurate in alerting to dangerous levels. Today one of the two companies that make them, Dexcom, announced FDA approval for remote (via an iOS device) monitoring. There are professionals who can help them learn to adjust insulin and carbs so the poor girl isn't so out of control, if she really is
Almost everyone with type 1 has "volatile" blood glucose excursions. Using a synthetic hormone to adjust glucose levels that are affected by a maddening number of different things (types of food, weather, stress, hormones, activity, etc) is like tossing wet noodles at a moving target. However, that doesn't mean death is waiting at every turn. Yes, you must be vigilant and diabetes is always in the background, but it need not be the central focus in life. The fear, especially, is way out of proportion in this depiction.
13
I have been Type 1 for 31 years. Yes, I do take shots several times per day and check my blood sugar several times per day. But I have also traveled to 177 countries, lived in 9, finished my MBA at age 21 and been able to every thing I wanted to. A Type 1 can live a perfectly normal life. Articles like this don't help. I wish more was written about how diabetes can be well managed and it can actually enabled folks to achieve a level of discipline which will turn out beneficial when managing a business
9
I also have a child with T1d. And I love drama. But even I thought this was a bit much. Everyone's diabetes is different, and this family has had a particularly terrible experience. I don't doubt that it's true, but am uneasy that their story is presented as typical Type 1.
The heaps of supplies on the kitchen counter are enough to take care of anyone's diabetes for weeks. That made me uneasy about the whole film. Did the director say to the mom, "That's it? That's all you need for a day? Bring out more supplies---we want this to look more arduous."
This film also made me extra appreciative of our Dexcom CGM. When the mom says she sometimes has to check Grace's blood sugar every fifteen minutes, I wondered if she knew about CGMs. (It checks every five minutes!) but how could they not know about CGMs? When they're enough in the loop to have a service dog?
We loved seeing the doggy paws up in the air when she's asleep with Grace on the bed. I'm happy that Grace and her family have that wonderful dog! I hope they get a Dexcom too.
The heaps of supplies on the kitchen counter are enough to take care of anyone's diabetes for weeks. That made me uneasy about the whole film. Did the director say to the mom, "That's it? That's all you need for a day? Bring out more supplies---we want this to look more arduous."
This film also made me extra appreciative of our Dexcom CGM. When the mom says she sometimes has to check Grace's blood sugar every fifteen minutes, I wondered if she knew about CGMs. (It checks every five minutes!) but how could they not know about CGMs? When they're enough in the loop to have a service dog?
We loved seeing the doggy paws up in the air when she's asleep with Grace on the bed. I'm happy that Grace and her family have that wonderful dog! I hope they get a Dexcom too.
10
I've had T1 for 33 yrs and our 7 yr old daughter was diagnosed with T1 in November. Our daughter is due to start an insulin pump this week and we will very quickly add a CGM to her routine. While my heart goes out to this family with their struggles in getting Grace's condition controlled, I definitely wont be showing this video to my daughter. Grace's case is clearly more of an exception than the norm and I just hope there aren't too many of my parent friends watching it and crossing my daughters name off of birthday party and sleepover lists for the next 10 years.
9
Type 1 for 64 years. Probably 36,000 shots. Probably 110,000 glucose tests. Probably 10,000 medical injections. You can thrive. You can prosper. You can even live well with a little discipline, with educated and caring parents. God bless. And keep up the good work.
11
Also a Type I, for 34 years. Took shots daily until I got on a pump 15 years ago, and now use a CGMS for the last 5 years; before that, I tested 8-10 times daily. When I was first diagnosed, like many people on here, there was urine testing and injections. Life is a lot better and a lot safer, but never did I think I wouldn't wake up in the morning, nor did my parents test me in the middle of the night. I suggest, like others, she get on a CGMS that alerts you with loud noises, when you are under 70. Why doesn't the dog wake the girl up if she is low in the middle of the night? Why doesn't the girl wake herself up to test? She is old enough.
I want to assure the parents that I went away to college and have a successful career as an archaeologist, meaning I've been far from any hospitals working in the heat for 10 hours a day with no problems.
A few things that helped me:
-diabetic camp, which helped me meet other diabetics, learn how to negotiate and take responsibility for the disease and gave my parents a needed break for 2 weeks
-being proactive and not reactive to blood sugars. A CGMS software will allow you to download and track patterns of blood sugars and adjust basal rates to prevent highs and lows, not react to them. You're on a roller coaster pattern here, and you can control it and get off.
-find another doctor if they haven't identified this and taught you how to do it.
I want to assure the parents that I went away to college and have a successful career as an archaeologist, meaning I've been far from any hospitals working in the heat for 10 hours a day with no problems.
A few things that helped me:
-diabetic camp, which helped me meet other diabetics, learn how to negotiate and take responsibility for the disease and gave my parents a needed break for 2 weeks
-being proactive and not reactive to blood sugars. A CGMS software will allow you to download and track patterns of blood sugars and adjust basal rates to prevent highs and lows, not react to them. You're on a roller coaster pattern here, and you can control it and get off.
-find another doctor if they haven't identified this and taught you how to do it.
15
I did think this film was a bit melodramatic. I am married to a man who has very brittle type 1 diabetes. He has gone into shock many times over the years and I have used glucagon injection to bring him out of it. It does not, as was mentioned in the film, require a trip to the ER. Neither the directions on the package nor the doctor specifies "call 911" although I suppose you can if you panic. All that does is waste time, resources and money. The glucagon brings them right out of it, then you monitor for an hour or so and adjust accordingly with food. If this girl's mother continues sleeping in three hour shifts with bursts of adrenaline in between, SHE won't live to see her daughter finish college!
12
I hope the parents of my 10 year-old type 1 daughter's friends never see this article or watch the documentary...they will never invite her over again to spend the night. Good thing I'm an adult with type 1 and don't get invited to spend the night out anymore.
3
My sentiments exactly.
My gosh, can we please have some empathy? When did the documentary ever state that it is intended to represent the experiences of all Type 1s? Thankfully many of you have conditions that are well-controlled or you don't have a friend (or several) who lost the battle. Don't discount this family's situation simply because it's different from your own.
22
Linda, most people watching this film have no way of knowing how atypical this girl's case is. That's the problem and the reason why so many Type 1s here are so critical of this portrayal. The narration should have pointed out that this was an unusually severe case, marked not just by volatile blood sugar swings but Diabetic Unawareness.
The latter condition makes control difficult to achieve but is rare in a Type 1 who hasn't had the disease for a long time. Nothing says the film needed to show a typical Type 1 family situation, but with so few films made about Type 1, the filmmaker had an obligation to put this case in clear perspective.
In general, Type 1 diabetics hate being thought of as sick patients requiring intensive 24-hour care. That is not the reality.
The latter condition makes control difficult to achieve but is rare in a Type 1 who hasn't had the disease for a long time. Nothing says the film needed to show a typical Type 1 family situation, but with so few films made about Type 1, the filmmaker had an obligation to put this case in clear perspective.
In general, Type 1 diabetics hate being thought of as sick patients requiring intensive 24-hour care. That is not the reality.
It is incredibly disappointing to me that the film maker chose to depict Type 1 diabetes in such a melodramatic way. As the mother of a child who was diagnosed at 15 months (now 26 yrs old) I never worried about him dying suddenly nor have I ever heard any other person afflicted with diabetes live with this fear. I did worry incessantly about raising a physically healthy and emotionally stable child which is I think the goal for many parents of children with Type 1. There is no doubt that diabetes is a difficult disease. Those who live with diabetes should be admired for their diligence and respected for the burden of having to think about so many things most of us can take for granted. I wish the filmmaker had focused on the truth of this disease and left the scare tactics and melodrama out of his film. I think that the "true story' of life with diabetes is far more compelling than the fiction presented in this documentary.
11
I was 16 when I found out I had type 1 diabetes. No doubt it was a life changer, and devastating, but as soon as I was done processing the "news", I was onto learning how to manage diabetes the best so I could live a long life. During the time I was at the hospital learning to manage, live, and treat diabetes, I met an older lady who told me, "I am here only because I wasn't taking care of my self, but believe me when I tell you that I have been living with diabetes from before we had synthetic insulin." I never forgot the wise words from that old [grandma like] lady. I am 46 now and living life like, or even better than non diabetics. Somehow diabetes put an order to my life and sometimes I think I would be much more "unhealthy" if I didn't have diabetes. I feel sorry for the young girl because it seems mom and dad are obsessing about it too much. My mother always checked and still checks on me, but as soon as she knows I am ok, she let's me take care of things. I married and have two beautiful daughters, a beautiful, loving wife. I would not change a thing, but at times when I hear about new -more permanent- treatments, I want to be selected to try them... it would be nice to wake up one day and not have to worry about taking insulin, maybe one of these days. Cheers,
9
I have mixed feelings about this video. As others have mentioned, the filmmaker should have addressed why the family is not making use of modern tools to help monitor and manage blood glucose (i.e., CGMs, Nightscout). Perhaps this is an important part of this family's story. Is it the the expense of CGMs, and therefore an insight into the high cost of type 1 management, or maybe inadequate medical insurance? Is it that Grace refuses to wear the device because peer conformity is important to her, and therefore an insight into the psychosocial dimension of type 1 diabetes? I think there are some gaps in this film and I'd be very interested to know more.
10
Thanks Sarah--I arrived late to this thread, and this seems the most intelligent comment I've encountered. I have T1 as well (31 years now), and like a lot of us the film left me perplexed. If they'd gotten at some of those underlying problems it might have seemed less like they meant to portray this as a representative case and possibly of more general interest.
Like others, I find this video overly dramatic. I live with this disease (Type 1 diabetes) too, but I don't let it stop me. I travel the world, I am licensed and medically certified to fly an airplane. I work a job just like everyone else.
I use a continuous glucose monitor which monitors my blood sugar every 5 minutes and alerts me if it is getting too high or low. Yes, I have a big pile of supplies as the mother shows and yes, I have to take a lot of stuff with me when I travel... but its not a death sentence and one can definitely go to college or do anything else you want to do. The diabetes center I am treated at in NY tells patients they can do anything they want to do, except perhaps be a fighter pilot.
The latest data published in the Journal of the American Medical Association shows that complications can be dramatically reduced and lifespan improved with intensive control, without excessive hypoglycemia-related death.
http://jama.jamanetwork.com/article.aspx?articleid=2088851
T1D varies a lot from person to person, but I can't help but think that Grace and her family could have a better quality of life with less work with the help of some of the newer technology and perhaps the asssitance of a top academic diabetes center to help with stabilizing her blood sugars and training her how to manage the disease herself.
I use a continuous glucose monitor which monitors my blood sugar every 5 minutes and alerts me if it is getting too high or low. Yes, I have a big pile of supplies as the mother shows and yes, I have to take a lot of stuff with me when I travel... but its not a death sentence and one can definitely go to college or do anything else you want to do. The diabetes center I am treated at in NY tells patients they can do anything they want to do, except perhaps be a fighter pilot.
The latest data published in the Journal of the American Medical Association shows that complications can be dramatically reduced and lifespan improved with intensive control, without excessive hypoglycemia-related death.
http://jama.jamanetwork.com/article.aspx?articleid=2088851
T1D varies a lot from person to person, but I can't help but think that Grace and her family could have a better quality of life with less work with the help of some of the newer technology and perhaps the asssitance of a top academic diabetes center to help with stabilizing her blood sugars and training her how to manage the disease herself.
9
Hello,
I was just hoping I could get the name of the clinic in NY you attend. I am a type 1, and my doctors aren't as great as the ones I had with my previous (much better) insurance. Thank you!
I was just hoping I could get the name of the clinic in NY you attend. I am a type 1, and my doctors aren't as great as the ones I had with my previous (much better) insurance. Thank you!
Type 1 diabetes absolutely is different for children and teens. Blood glucose is more volatile at that age because of hormones. Bodies are still developing. It is interesting but odd that the community has such a negative reaction. This video is about one child's experience with diabetes and how her family supports her condition. I hear a lot of judging and making comparisons to "my experience with type 1 is easy or this or that" Great! I don't think anyone would dismiss your success. Two, people DO have early death and threatened mortality - and the threat is hypoglycemia. Tons of studies verifying this - look them up. Sometimes victims are young (I hear word at least 2-3 times bi-monthly of deaths). Sometimes the individual is six, 12 or 40 years old - more recently a father who was 33. Deaths are under-reported for all kinds of reasons. Last point on technology. Yes, the Continuous Glucose Monitor is available. I am sure this family is aware, but how about the humanity involved here? What if this beautiful girl doesn't want to wear another machine that requires another puncture and device on her body? What if her family is allowing her to be a part of her choices in self-care? What if the dog makes her happy or happier and this in turn provides her with a more positive outlook for her Type 1 diabetes. That would be health beneficial. Interesting that so many fail to see this very important aspect. Reflects something - don't you think?
11
the sooner we can 'master' the intricacies of transplantation, the better; I remember, years ago, when I would see a young insulin-dependent diabetic with one infection after the next, in need of drainage (I and D), with her health deteriorating 'by the hour', due to intractable renal failure, rise from the ashes after a renal transplant, happy as a lark and full of life again. If that was/is possible, it doesn't take much to figure out the 'miracle' of a cure if the failing culprit, the pancreas, can be had safely (replaced, that is).
1
Pancreas transplantation has been attempted, of course, as well as transplantation of islet cells. But apparently the auto-immune response that caused the disease in the first place is still active and the patient is back to square one in a relatively short time. There's currently an attempt to transplant the cells within some kind of protective envelope that's permeable to insulin however. Maybe that will work.
I was diagnosed 31 years ago and we've been "five years from a cure--ten max!" as long as I've had it.
I was diagnosed 31 years ago and we've been "five years from a cure--ten max!" as long as I've had it.
Somebody should have done their homework before publishing this video; I was shocked to see what is basically advertisement for Warren Retrievers in the video. The questionable and unethical business practices of Warren Retrievers is well known within the diabetic alert dog community. As quoted on fox43.com...According to the website for the Attorney General in Virginia, where the company is based, 26 complaints have been filed against the organization Service Dogs by Warren Retrievers formerly known as Guardian Angel Service Dogs, Inc.
4
As a Type-1, this is sensational propaganda & the way they piled weeks (months?) worth of supplies on the kitchen counter right off the bat was designed to overly dramatize the care we require. For most of us, a typical day requires maybe 10 mins of diabetes-specific care to test our blood, inject/bolus, and make corrections as needed. A few pricks of the finger, quick shot, & move on. Most teens can handle these care elements care independently. If the teen is a brittle diabetic, her insurance company likely will cover a CGM & that would eliminate these parents' 12, 3, and 6am checks, which seems like a desire for motherly martyrdom. Also, are the deaths discussed deaths of her close friends she sees in her life, or are they friends she has met online or in brittle diabetic support groups? Most type-1s don't in fact die at a young age; it is relatively rare. The mother said kids traveled from all over the country for the funeral, which makes me believe these are children who know each other from a support group of high-risk patients and these deaths, while tragic, reflect the rare few that occur each year across the country in a small subset of children. More statistics are needed for balance. The subtler, fatiguing mental weariness of having a chronic, invisible disorder is compelling enough on its own without needing such sensationalism. This video is not representative of the majority of Type-1 diabetics' lives and creates an unneeded pity party for many of us.
9
The 15 year old girl that passed in May went to Camp Sweeney. She was loved so much by fellow campers. Kids from all over the United States go to Camp Sweeney. Dead in the bed syndrom is very real and under reported.
1
I wish that writers of pieces like this would be clear that hypoglycemic events are not per se a part
of T1 or 2 diabetes, but are rather the result of too much injected insulin (or other meds in the case of T2) given the levels of caloric intake and other metabolic factors. These facts do not lessen the effects of hypoglycemic episodes, which are dangerous and experienced by virtually all insulin dependent diabetics, but do suggest better outcomes based on better management of injected insulin especially.
of T1 or 2 diabetes, but are rather the result of too much injected insulin (or other meds in the case of T2) given the levels of caloric intake and other metabolic factors. These facts do not lessen the effects of hypoglycemic episodes, which are dangerous and experienced by virtually all insulin dependent diabetics, but do suggest better outcomes based on better management of injected insulin especially.
I would disagree with you on that, John. We are doing our best to "think like a pancreas" but there are many, many variables. Further, the tighter someone's blood sugar control is, the greater chance that they will experience a hypoglycemic episode.
1
I am a Type 1 Diabetic and produce 0 insulin of my own, a fact refered to as "no back up insulin" by some of us T1's. I always have to carry a bottle of Glucerna (for Diabetics) in case my blood gets too low, in addition, physical activity will eat up my injected insulin. I keep my A1C's at about 5.2 to 5.6 in hopes I can ward of complications. I have never let T1 rule my life and I am now 60 yrs old and hope Grace can get to this point in the near future.
2
I was baffled by the melodramatic description of type 1 diabetes but was heartened by the comments of people who have been living with the condition for 30 or more years. My daughter, now 55 was diagnosed with diabetes when she was 11 and has been living a normal life (almost) life. She went to Europe with a friend when she was in high school, went to college in Pennsylvania, married and has a 20 daughter all without a helicopter parent. Her secret?: When she was first diagnosed she went to Joslin Diabetes Research Center and then to the summer camp they run. From the very beginning she was taught how to monitor her blood sugar, control her diet and generally take charge of her own life. A helicopter parent is not helping a child.
4
"over dramatic"?
This is about a LIFE that cannot be lived without active and constant intervention. But really glad you can live blithely, "playing it down."
Oh, and those "months of supplies"? Hooray for their inclusion! I only regret that the film could not show the amount of supplies Grace will be required to use -- and pay a ridiculous amount of money for -- over her LIFETIME. The film showed maybe four months' worth, and if Grace lives a "normal" lifespan, she will have gone through 900 times the supplies and close to $1.7 million.
Yeah, it's really not that bad.
This is about a LIFE that cannot be lived without active and constant intervention. But really glad you can live blithely, "playing it down."
Oh, and those "months of supplies"? Hooray for their inclusion! I only regret that the film could not show the amount of supplies Grace will be required to use -- and pay a ridiculous amount of money for -- over her LIFETIME. The film showed maybe four months' worth, and if Grace lives a "normal" lifespan, she will have gone through 900 times the supplies and close to $1.7 million.
Yeah, it's really not that bad.
9
It's not a matter of "playing it down". It's accepting it for what it is. T1 sucks, there's no doubt about it. But dwelling on it does no one any good. It doesn't have to consume your every waking moment, or half of your night for that matter. It just doesn't.
I am a T1 also, acquired in my 5th decade of life. Just got a CGM last year and now can't imagine life without it. They are very expensive, however, and it took me years to convince by HMO to partially cover it. I agree that all T1's should have one, but the insurance industry is not there yet. And because of the expense ($5000 for the receiver & $75 per sensor needed weekly) even with insurance not all diabetics will be able to afford one. A teenage T1 in Madison died a few years ago and he had a pump and all the technology available. As was mentioned already, we're all different, not every body is resilient.
5
If we-- the richest country in the history of the world-- had a civilized healthcare program (like all of our counterparts), dealing with an insurance company on any supplies for this dreadful disease would not be an issue. your blithe comment that "the insurance industry is not there yet," should instead be true outrage that they have a voice.
I just made a donation to the Juvenile Diabetes Research Fund. I was motivated by Grace and her mom to do so. Grace, your mom and dad really named you well.
3
I think many of the comments, seeing as they come from people who have diabetes, don't necessarily understand being on the other side of this disease. While it may seem degrading and authoritative to someone who has Type One, to a caretaker of someone with Type One diabetes, it's a very hard position to be in. A mother, any day of the week, would give anything for this to be happening to her and not her kid. It is true that you can live a healthy life as a Type One, but that doesn't mean it doesn't come without so much effort. Just because diabetes is manageable, it doesn't make it easy. This was great insight on the lives of a family who has experienced all the hell that diabetes can throw at you, and still have hope for others like Grace, and for a cure!
6
As a T1D for nearly 15 years (dx at age 16), I really feel for Jackie and her mother--and I can really sympathize with their fears and concerns. I especially am familiar with that initial scene--all of the medical supplies taking over the counter. Jackie and her family are entitled to treat T1D however they see fit; but I do think it's worth mentioning that type 1 diabetes is a very treatable condition, that people can live long, active, and adventurous lives. I've lived abroad twice, worked a variety of jobs, run half-marathons, just got married and plan to have kids soon. These are all things I am capable of--and I think it's worth mentioning to the rest of the world that T1D is a very personal, variable condition. I really hope Jackie and her family see the hope that is very much out there--and that Jackie goes on to live a long, healthy and active life. I'm very certain she will. Thanks to them all for bravely sharing their perspective--and for the documentarian for bringing this important issue to light.
1
Type 1 Diabetes was indeed a fatal disease of childhood...in 1921, before the discover of insulin.
While I obviously don't have any of the details of her case, it certainly seems that she needs a continuous glucose monitor and an insulin pump (which can now be electronically linked to prevent hypoglycemia).
While I obviously don't have any of the details of her case, it certainly seems that she needs a continuous glucose monitor and an insulin pump (which can now be electronically linked to prevent hypoglycemia).
One more plug for CGM. I use the MiniMed 530G system which monitors sensor glucose and can suspend basal insulin when glucose level drops below a threshhold and can give predictive alarms to warn of lows and highs. FDA approved the system for use in persons sixteen years of age and older, so Grace (15 years old?) could use this soon if not right away. She's already using a minimed pump, so adding CGM wouldn't be too difficult. Others have commented about Dexcom CGM products which I'm sure are also good, and either would be a big improvement over the constant fear and the midnight 3 and 6 alarms.
There are other comments about how overly dramatic and inaccurate this video is. I was also under the impression that death from hypoglycemia was extremely rare, but I found this on the JDF blog - http://bayarea.jdrf.org/blog/percentage-people-type1-diabetes-die-low-bl...
This was several years ago and I hope it's becoming less than 5% of type 1 diabetics that die from low blood sugar. I think that improved treatment options - CGM for now and ultimately (we hope) a closed loop artificial pancreas - should make mortality from low blood sugar among diabetics virtually non-existent.
Good luck to you Grace, and hang in there while you're mother learns to let go.
There are other comments about how overly dramatic and inaccurate this video is. I was also under the impression that death from hypoglycemia was extremely rare, but I found this on the JDF blog - http://bayarea.jdrf.org/blog/percentage-people-type1-diabetes-die-low-bl...
This was several years ago and I hope it's becoming less than 5% of type 1 diabetics that die from low blood sugar. I think that improved treatment options - CGM for now and ultimately (we hope) a closed loop artificial pancreas - should make mortality from low blood sugar among diabetics virtually non-existent.
Good luck to you Grace, and hang in there while you're mother learns to let go.
3
I could watch only a few moments of this nauseating, melodramatic, overwrought weep-a-thon. And yes, I have had Type 1 diabetes for 43 years, have worn an insulin pump for 34 years, and have had a continuous glucose monitor for over a decade. Yes I deal with my disease every day, many times. But I can mentally and physically take part in any activity one can imagine. Compared to so many disabling diseases.....I'm lucky. Deal with it.
25
No where in this film does it say that the girl cannot take part in anything that anyone else can. It's almost sickening that you take such a light approach to "dealing" with this disease. I hope you are able to one day grasp the feelings that come from families of kids with type-one that didn't get as lucky as you. Every case is different, don't generalize and make light of any disease.
3
I couldn't agree more - I've been a type 1 diabetic for 23 years, I've had an insulin pump for 19, this is a ridiculous over-dramatization. Did anyone fact check any part of this? Low blood-sugar cannot kill someone within minutes, nor would I ever describe my diabetes as "life-threatening". There's enough misinformation about what Type 1 diabetes is out there already. Honestly, the managing of the diabetes is second nature at this point, there's literally nothing a normal person does that I can't or don't do. For my two cents it's the cost of care and treatment that's the biggest burden for a type 1 these days, not worrying that my diabetes may kill me at any moment.
1
wow! You're so tough! Impressive! Congratulations!
It's a terrible, scary disease my 7 year old has. Maybe in 40 years he'll feel as you do, but for now we worry every day about keeping him alive. He can't even be responsible for himself. I'm not sure what your point is or why you are so insensitive
It's a terrible, scary disease my 7 year old has. Maybe in 40 years he'll feel as you do, but for now we worry every day about keeping him alive. He can't even be responsible for himself. I'm not sure what your point is or why you are so insensitive
11
While I know nearly next to nothing about type-1 diabetes, the comments here seem puzzling to me. The mother clearly said that her daughter's disease was volatile and uncontrolled and that she had recently lost 4 friends in 5 years. That's a lot of loss by any count. I don't understand why so many commenters have discounted the mother's worry. No-one ever said this is a typical case. It's simply what she and her family endure daily. I'd love to hear more from the director, Joe Callander, or from the family itself pertaining to some of the comments. Does the daughter wear an CGM? Why or why not? Either way, I thought it was a beautiful film, haunting and enlightening. I didn't find it alarmist at all, and I certainly now have a new awareness for diabetes. Thanks.
38
I agree.
I am always pleased to see Type 1 D get press attention, however this film is really over dramatic. Our daughter is 17 and was diagnosed at 2. We must be ever vigilant, but we find that life is better if we play it down, not up. Those piles of supplies were months of supplies. We are hyper-vigilant and we do check in the middle of the night, but we don't mope around about it..
Fortunately, we have only ever heard of four deaths in our 15 years, two in nonfiction books, one in a newspaper account, and one through an acquaintance. I did go along on sleepovers, when she was younger, but cell phones and 3 AM texting have since enabled our daughter to travel in Europe with a school group, and to go to an arts camp 3 hours away for three weeks. The kids can learn to be careful, and her teachers/counselor's know that if we can't reach her in the middle of the night, we'll wake them. Our daughter is going off to college in August. She will have a new CGM and we will ask her for a text every morning, first thing, but she has to have a life, and she will!
Fortunately, we have only ever heard of four deaths in our 15 years, two in nonfiction books, one in a newspaper account, and one through an acquaintance. I did go along on sleepovers, when she was younger, but cell phones and 3 AM texting have since enabled our daughter to travel in Europe with a school group, and to go to an arts camp 3 hours away for three weeks. The kids can learn to be careful, and her teachers/counselor's know that if we can't reach her in the middle of the night, we'll wake them. Our daughter is going off to college in August. She will have a new CGM and we will ask her for a text every morning, first thing, but she has to have a life, and she will!
16
Good luck sending your child off to college. If she can navigate the social, educational and medical pressures alone (remember that after age 18 you are not privy to her medical or school activities) more power to her. If not, the loans still have to be paid back even if she can't manage, as my daughter experienced. Medical leave of absence still means you have to pay the loans back. BIG PROBLEM.
What an amazing film Joe! Our family appreciates you deeply for helping get the word out about Type 1.
6
Three cheers for Grace, Jackie and her family for pulling together. It's not easy to live with life-altering and life-threatening illness. The frustration, exhaustion, and anxiety are part of daily life.
Grace's spirit shines through. And the love of her mother is a beautiful thing to see. I found them inspiring.
Grace's spirit shines through. And the love of her mother is a beautiful thing to see. I found them inspiring.
8
Everyone's T1D is different; we also have a daughter, same age as Grace, with Type 1. It might help the Chamberlain's to research Nightscout (http://www.nightscout.info/) which, in conjunction with some Conginuous Glucose Monitoring devices, can help keep better real-time track of blood sugars, even remotely. But it is not my place to say that this is a fit for their situation; it's just another potential tool.
8
Having had Type One for 0ver 55 years I'm surprised by the animosity of some of these letters, especially from other Type One patients. Yes, the mother here might be overprotective (many modern mothers are, no?). But when first diagnosed in the 1960s some kids died. Complications arose. There was no way to monitor as there is now. But people should know that each case is different. Every affected body is different. In some patents low blood sugar can result in what some call "psychotic" reactions which can be terrifying and lead to severe results. Some who write here might be surprised to find how Type One will affect their brain synapses - and other parts of their body - as they age. Like many diseases the long term effects were unknown because when diagnosed in the 1960s not many with Type One lived past their 70s. And there has been research showing that those of us who survived for so long did so as a result of blood conditions, not always because of our perfect attention, our skills and smarts. It seems like many who wrote here are both smart and lucky. Others have not been so. Finally, there's no need to compare the severity of one disease with another. Listing which disease is "worse" than another is immature and belittles all of those who are sick.
92
Everything that Charlie says here is accurate. But I don't think folks have shown anger toward the young lady and her mother, as much as frustration that the film does portray one person's (and her mother's ) experience as representing what all Type I diabetics live through on a daily basis. Moreover, the film simply ignores the fact that technology is available to make the life of this young lady and her Mom a bit better. Nevertheless, my own experience is that life with Type I generally is not that fun. It requires constant surveillance and adjustment. And it can be extremely frustrating. It makes life difficult at times. But I think maybe not as difficult as portrayed in this film. And I have survived those 49 years without complications as a result of a fair amount of my own effort and some luck. I wish this young lady and her family the best.
29
Thank you for saying this
2
I was diagnosed in 1946, and things weren't great then; b think 1) the filmmaker has done a great disservice to all Type1s, especially young ones -- we are not doomed people; and 2) the parents are engaging in destructive "helicopter" parenting, infantilizing the young woman (as does the dog). My 16 year old granddaughter takes full responsibility for the Type1 management. The Times should be ashamed for publishing this without vetting by someone who knows something about Type1 Diabetes
As a mother of a twelve-year old child who was first diagnosed with Type 1 Diabetes three years ago, I had mixed feelings about this article. I do not mind seeing Type 1 Diabetes being referred to as a life-threatening disease. The fact is that without continuous ongoing monitoring of carbohydrate intake and blood glucose levels, Type 1 diabetes can be a life threatening condition. That being said, having Type 1 diabetes or caring for someone with Type 1, becomes a daily fact of life that is part of a routine. With discipline, knowledge and the resources to pay for medical care and supplies, the person with Type 1 diabetes can live a long and healthy life. I sometimes think that it is easier to be the person with Type 1 diabetes, as intrusive and demanding as that reality is, than the parent of a Type 1 child. It is frightening as a parent to read about such things as "Dead in Bed" syndrome and all the possible complications that can occur from having higher than optimal blood glucose levels. While I did wonder why the parents don't get a CGM for their child if they are so concerned about nighttime blood sugar levels, I was grateful to see the 24/7 nature of caring for a Type 1 diabetic child pointed out. You don't always have to be doing something but it is something you can never really forget.
18
Well said!
My granddaughter was diagnosed 2 years ago at 15. She does have a hard time with visits to the ER about once a quarter. I don't think she has the continuous glucose monitor, I'll check with her parents. The dog is a new one for me--they have a dog, but might consider another one trained to identify problems.
I do worry about my granddaughter's future. She says she doesn't want to go off to college but to attend a community college and become a cosmetologist, and her parents are fine with that, in fact they don't want her to leave either. I took her to Europe when she was 11, but now her parents don't want her to travel without one of them, and I frankly don't want the responsibility either. The other grandmother had type 1 and died in a diabetic coma three weeks after my granddaughter was born. The younger granddaughter, age 10, is terrified that she will get it too. I am glad so many people seem to regulate themselves so easily, but it is not always the case.
I do worry about my granddaughter's future. She says she doesn't want to go off to college but to attend a community college and become a cosmetologist, and her parents are fine with that, in fact they don't want her to leave either. I took her to Europe when she was 11, but now her parents don't want her to travel without one of them, and I frankly don't want the responsibility either. The other grandmother had type 1 and died in a diabetic coma three weeks after my granddaughter was born. The younger granddaughter, age 10, is terrified that she will get it too. I am glad so many people seem to regulate themselves so easily, but it is not always the case.
12
I have been a Type I diabetic for almost 49 years. I was 12 when I was diagnosed. This young lady's story is heartbreaking, and I have sympathy with her and her parents. But I have to agree with some other commenters that the film is an exaggeration of what most Type I diabetics deal with. Death does not instantly result from a low blood sugar. Nor from a high blood sugar. Death is simply not an every day threat from Type I. Instead, the more important problems are the long-term adverse consequences of the disease, e.g., heart disease, nerve damage, retinal problems, kidney failure. But those things do not happen overnight. And these long term adverse effects are really the reason more research money needs to be devoted to a cure. This film uses the extreme difficulties of one young lady to over-dramatize the life of Type I diabetics. She has many more choices for control, including a continuous glucose monitoring device and software which can continuously provide the young girl and her parents with blood glucose readings. Her parents simply do not have to wake up and test her three times a night. Her mother needs to let her daughter grow up and deal. She will be fine.
20
This is absurd. My brother was diagnosed with Type 1 when he was 10 years old, and is now 21. He wears a pump that continuously monitors his blood sugar levels and administers insuline when it is getting too high, and alerts him by buzzing/beeping. There is no need for him to be waking up at all hours of the night unless there is something actually wrong. This is so over dramatic and will give others the impression that diabetes is a death sentence. With proper diet, exercise, and steady monitoring of blood sugar levels, diabetics can have a normal life.
25
CGMs will monitor your blood sugar, but there are no FDA approved devices that will correct your blood sugar for you. You still have to wake up and either eat something or bolus (inject insulin). Even with technology to help, it is still a difficult disease.
18
Actually I doubt his pump administers insulin I'm it's own accord when your brothers BG is high, unless he has an artificial pancreas. Rather HE must see first if he is high and the self a minister a correction bonus. I know it's a small difference but in your example it seems automated, but typically it isn't. (Yet)
6
The CGM is a great tool, but please know that the technology is far from perfect. In fact, in the 14-day lifespan of a sensor, it can be wildly inaccurate as it's calibrating over the first 24-48 hours. No, you don't need to routinely wake up through night (how would you even know what time to wake?). But you can never go on auto-pilot. Even the "artificial pancreas" will require some degree of vigilance because of technology failure.
as a person who has had TI for 26 years I bristle when words like "nightmare" are used to describe its impact. Yes, there a moments when TI is less than fun, and blood sugars make reality feel like a house of horrors. However, the hysterical language that often goes with media coverage of the condition--read "nightmare"--does a disservice to those of us and our families who live well with diabetes,.
14
Agreed. And maybe going to a different endo would be a benefit to the family. Let the girl learn how to manage it. That way she becomes independent as well. I was diagnosis at 9 and I think my parents did my shots for me for 2 years bc I hated needles ... Prior to insulin pump... But if I wanted to be normal and go to my friends for sleepovers I needed to learn in my own. And I did... My control is hard to manage and I am lucky to identify lows but the technology helps. Also I believe all the checks and corrections could be the reason for the lows, like I said maybe a different endo if 4 or 5 young people passed in that area. Good luck it will be ok! It will be 20 years for me in April.
I have had type 1 for over 50 years, use a pump and had an over protective mother too. Tell the mom to let go a little, somehow it all works out,
10
Fred, how could you say that "...somehow it all works out"?
You must have missed the part where she described going to the funeral of her Type 1 high school friend. That's a description of how it sometimes DOESN'T work out.
You must have missed the part where she described going to the funeral of her Type 1 high school friend. That's a description of how it sometimes DOESN'T work out.
6
I have a cousin in her 60s who has been type 1 for over 40 years, also uses a pump now (she did injections before that), and has always flat out refused to let any of the family including her own mom, make a big deal out of it. The one and only time I have even alluded to it was at my mom's 75th birthday party, when the punch had sugar in it. I just went up to my cousin and whispered to her that I had made unsweetened iced tea for anyone who didn't want the punch.
1
While informing her about the tea was considerate, you kind of missed your cousin's point. She could have drank the punch without problem; Type 1 Diabetics can eat whatever they want, as long as they take insulin for it, which is made easier with the pump. Part of the reason a lot of diabetics do not want others to make a "big deal" about their diabetes is because a lot of people are completely misinformed about the implications of the disease. For future reference: Type 1 diabetics count carbohydrates, not sugar, and a lot of sugar-free stuff tastes absolutely terrible.
Please have someone tell the Chamberlain family about Continuous Glucose Monitors (CGM). According to the manufacturer's web site the Dexcom G4 Platinum is approved for use in children down to the age of 2. It also has the ability to issue remote alerts to caregivers using a cradle for the receiver and the Internet to send alert to iOS devices. I was diagnosed with Type 1 diabetes in 1978 and have been using the Dexcom monitoring systems since 2010. Before CGM I had regular occurrences of hypoglycemia that resulted in visits from the EMTs and even visits to the emergency room. Since I received the first CGM system I have never had the questionable pleasure of seeing the EMTs. The systems are less intrusive than an insulin pump and are simple to use.
23
In the film, she shows her diabetic alert dog. I feel like this would compare to a CGM. Like the mother stated, it is a sort of insurance. However, I don't see how you, along with some of the other comments, think that a CGM will somehow change how this family is living, as if it was equivalent to a cure. Just a thought.
The CGM enabled me to start living life without the limitations and uncertainty I had experienced since I was diagnosed. I have hypoglycemic unawareness and could often not tell that my glucose level was dropping until I got down into the 30's. Total helplessness can quickly follow that. The dogs may be a good option for some people but I am pretty sure I would get strange looks if I show up in a conference room with one. A small device in my pocket is not noticed by anyone.
With the CGM I not only know approximately what my glucose level is but more importantly I know how it is trending. Knowing the trend allows me to proactively treat my condition, not just react. I am fully aware that the device is not perfect. The first day after replacing a sensor the readings can be wildly inaccurate but the trend indication is always accurate. If my receiver says my glucose level is dropping then it is dropping. And if I do the calibrations correctly I can always get the accuracy to within 10 or 20 by the end of the first day.
Now I can go running without having to worry about confusing the sweat from running with the sweat caused by hypoglycemia. I can take long drives without having to stop regularly to check my glucose level. And because I set it at the loudest and most insistent alert level at night I can sleep soundly knowing that I will be woken when something is not right.
A CGM is not a cure but it makes life with Type 1 easy as far as I am concerned.
With the CGM I not only know approximately what my glucose level is but more importantly I know how it is trending. Knowing the trend allows me to proactively treat my condition, not just react. I am fully aware that the device is not perfect. The first day after replacing a sensor the readings can be wildly inaccurate but the trend indication is always accurate. If my receiver says my glucose level is dropping then it is dropping. And if I do the calibrations correctly I can always get the accuracy to within 10 or 20 by the end of the first day.
Now I can go running without having to worry about confusing the sweat from running with the sweat caused by hypoglycemia. I can take long drives without having to stop regularly to check my glucose level. And because I set it at the loudest and most insistent alert level at night I can sleep soundly knowing that I will be woken when something is not right.
A CGM is not a cure but it makes life with Type 1 easy as far as I am concerned.
A wireless continuous glucose monitor (Dexcom) is the best solution to having to stay up all night to check blood sugars, well worth the investment. I too am Type I and my monitor (a wireless handheld device which communicates with a small pod on my waist which tracks my blood sugar) wakes me up at night with a buzzer if I have a low or high. If Apple or another company could make the investment to get blood glucose monitoring systems on smartphones or smart watches, diabetics would be able to see their blood sugars on their phones and treat faster. Every diabetic in America should have a CGM - why companies like Apple are taking so long to integrate CGM technology on phones is a mystery to me.
I agree that the film is overly dramatic - diabetes is not a death sentence and I worry that other teens, and distraught mothers, will see it as such. I appreciate that this pretty teenager opened up her struggles to others, though.
I agree that the film is overly dramatic - diabetes is not a death sentence and I worry that other teens, and distraught mothers, will see it as such. I appreciate that this pretty teenager opened up her struggles to others, though.
12
Agreed that the CGM is a blessing, especially at night. WE have had one for about two years. Reliability is not perfect, nor is accuracy. During stable periods, as a night, the CGM tracks finger sticks pretty closely. When unstable, the CHM can be off by more than 50%, which is much more than can be accounted for by the difference in monitoring BG vs interstitial fluid. It also goes "out of range" or gives us the dreaded question marks for reasons that cannot be explained by distance.
5
I agree, I have a dexcom and I'm still up at night monitoring things. The cgm although very helpful at times is also often VERY inaccurate in both directions for me and is not as reliable as finger sticks. It also fails to wake me when I'm in a deeper sleep. A well trained dog is probably much more reliable which this young woman obviously needs because her bg is very volatile. As and adult I find type 1 very difficult to live with. I have already had damage to my vision and my bg fluctuates a lot also, no matter how hard I try to control it, I work really hard at this. I'm lucky to be able to afford the tools I have, many can't. And it is still very difficult. People should be less judgementle in their comments here. People do die from type 1 and type 2. I nearly did when I was diagnosed in dka.
2
As of today, the FDA approved Dexcom's remote sharing app! BG numbers will go from the person with diabete's receiver to an iOS device to the Cloud, where they'll be transmitted to designated "followers" iPhones. Google "Dexcom Share"
This is at the top of the list of questions I am planning to ask G-d or the Devil about.
1
Quit acting like diabetes is equally as bad as cancer
3
For this little girl, I believe it may be.
2
What's God or the Devil for that matter have to do with this? God didn't give this girl diabetes any more than He gave my son cancer. We are born into mortal bodies. Things go wrong. It comes with being human. It's what we do about it that matters.
3
A heartwarming story. I have been a Type 1 diabetic for 48 years. For the last several years, I have worn a continuous glucose monitor which can do much of the work your family is doing at 12/3/6. I hope you will consider this option as Grace will need to live independently. You can set alert levels on your monitor to sound alarms if blood sugar is too high or too low. Parents can also monitor separately so late night finger testing is no longer needed. Best of luck for a long future.
30
Speaking as one who has grown up with type one diabetes since the age of three, I can do nothing but emphasize how inaccurate this article is. Yes, this is an opinion column, but realistically so much of what is said in both the article and video are completely comedic to me. The amount of dramatization which is forced throughout this article and video are ridiculous. You realize that a type one diabetic child's mortality rate in the United States is almost non-existent. You realize that it takes hours and hours to die of a low blood sugar and in those hours, you can either fix the problem yourself at home, or go to a hospital. When a blood sugar gets ridiculously high, it takes the body roughly 2 days to shut off and stop working. This mother is obviously overprotective and it will damage her child's future. Trust me. You can tell from the child's expressions and overall attitude towards the whole video that her mom goes over the top and does too much. Please do your research and maybe interview more than just 1 family and their approach to handling a very manageable disease such as type one diabetes. My life if honestly no different than my friends and your make it out to be much worse than it actually is. While you are a filmmaker, stick to the facts bud.
19
Some people have more trouble stabilizing their blood sugar than others do. JDRF uses the statistic that 1 in 20 people under 40 with type 1 will die of hypoglycemia. People can die that way.
6
No way would I do midnight, 3s, 3s and 6's. I have gotten up lots in the middle of the night to check BG and give juice. I have also administered glucagon (I do a mini shot in a 10cc syringe since glucagon makes you feel like crap). We have worked through large keystones from high BG, and convulsions due to low BG. We went to the ER only once- and admittedly it was due to the extreme heat and not wanting to deal with it- hospitals are a good place to get sick!)
What I don't understand is if they have a dog, let him wake the parents. Or get a CGM and place a baby monitor in the room.
Hey if it works for them doing 12,3, and 6's- knock yourself out!
What I don't understand is if they have a dog, let him wake the parents. Or get a CGM and place a baby monitor in the room.
Hey if it works for them doing 12,3, and 6's- knock yourself out!
2
Everyone's experience of the disease is different. I agree that this family seems to have an extreme overprotectiveness of their daughter. But recall that several of her friends and acquaintances have died recently. "Dead in bed" is real. Also, that this girl seems to have an especially volatile experience with her disease.
IMHO, too many well controlled t1ds as well as some med professionals, seem to believe that if you follow the cookbook the cake will come out of the oven perfect. That is simple not true for many of us dealing with this disease.
IMHO, too many well controlled t1ds as well as some med professionals, seem to believe that if you follow the cookbook the cake will come out of the oven perfect. That is simple not true for many of us dealing with this disease.
12