I have a blog where I have shared my story, I stopped with it for awhile but have decided after 14 surgeries and more to come its time I update it and continue it. I am about to have my 15th surgery, the one I have feared the most with an ostomy in the works, but I feel its important for all of us to know we are not alone. So many times this can be a fearful, depressing disease.
Read my blog at http://leesstory3031.blogspot.com
Ill be updating it in the next few days.
Stay strong, keep the faith, and hugs to you all.
I belong to Patients Like Me and have found it to be a wonderful online community to share and compare experiences regarding my Fibromyalgia, Chronic Pain, Chronic Fatigue and other Invisible Illnesses that I live with.
I also blog at pamelajessen.com where I share my journey with these illnesses and also how I volunteer in my province as a Patient Partner with Patient Voices Network. PVN works with Health Care partners to deliver the Patient Voice in engagements ranging from focus groups to conferences. I've had the privilege of speaking in front of 200 people on Information Governance, I've attended the annual Quality Forum, I currently sit on the Oversight & Advisory Committee for PVN and I also volunteer as a Clinical Resource Member for the BC Emergency Medicine Network.
Volunteering is a huge part of sharing about my conditions with other people. I get the chance to tell my story and to hear the stories of others, which leads to some real connections. I think that's what it really comes down to, is making connections with people and being heard. We all want a chance to be listened to and to know we're not alone as living with any type of Illness can be very isolating.
The more we have a chance to connect with others, the more empowered we become. Groups such as Patients Like Me and various Facebook forums are critical to creating these environments and I strongly urge anyone who is feeling isolated to seek them out and join in.
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People need to know they are not alone in their heath challenges. I see that as a vital part of treating the "whole person". Its a huge comfort to have a sounding board that truly relates to your experiences, angst and fears, and a golden opportunity to be able to offer someone else support and a piece of yourself. For some of us, life as we knew it, changed significantly with our disease development and our feelings of belonging and contributing suffered greatly . Online commumities such as Patients like Me are great tool for reaching out and feeding these important parts of our well being.
1
I couldn't agree more: patients absolutely need other patients. The U.S. version of the Database of Patients' Experiences mentioned in the article - featuring patients sharing who share their experiences with health and health care as part of rigorous qualitative research projects-- can be found at www.healthexperiencesusa.org; check it out.
Our medical system is incredibly isolating. They put you in a room alone, talk to you, maybe answer some of your questions, maybe not, operate on you, send you home. You have no idea if what you experience is normal, unusual, understood. Especially when the docs don't have answers. So you are left with scouring the internet to find others with a similar experience. (And thank goodness to all the brave souls willing to post on blogs, chat groups, etc. who are out there to be found!) I even asked the surgeon if there was a support group I could join. All she could do was refer me to a psych. Another isolating experience.
Of course there's all the privacy, confidentiality and HIPPA stuff but if people are asking for connection, and even if they don't know to ask but are needing it, seems like all clinics should have some type of peer to peer program which they can offer clients.
Human beings aren't meant to be isolated. Community is incredibly important for healing and recovery. Our current medical system does little to foster and support that.
3
My husband has late effects from radiation for cancer - a condition that is chronic, ongoing and without a specialist home for treatment. Without the support of an online group, he would not have found a really valuable treatment - the doctors we were connected with simply didn't know about it at the time. 16 years later this treatment is well documented for its effectiveness for certain kinds of radiation late effects. Sometimes you do find out about treatment alternatives from other patients - But you do have to be careful. The list we were on was monitored to make sure no one was hawking a product.
2
This wonderful article gets to the heart of the problem with modern care delivery - there is an asymmetry of information in health care and an important gap between what our doctors can do for us and what we need experientially.
Peer support is a reflection of our basic social orientation - patients deserve avenues that address their fundamental need for connection and context. We need much more of the same and across the entire spectrum of care - from ground breaking clinical research through end-of-life.
4
So true.
A site like protonbob.com is invaluable for prostate cancer patients, with its database of former patients willing to talk about their experiences.
Especially after you figure out that many urologists are making that referral for radical prostatectomy instead of (proton) radiation therapy because of the kickbacks they get from the hospitals.
3
I have an unusual combination of serious conditions, and at an unusually young age to have any of them. Not many 36yr olds in stage IV heart failure. Seen and experienced things that wouldn’t happen to people much older and am a seasoned veteran of hospitals, end-of-life care and mortality - not that I think any of that is worth a boast. It’s a very lonely experience, and I’ve grappled with a lot of things by myself. I don’t open up to my parents easily, and my ex-wife refused to listen to fears, grief, anxiety etc (one reason she’s now an ‘ex’).
But I shun patient groups, or meetings of similar on social media. I’m young for the dedicated groups, with little else in common, and I see the social media groups as unhelpful or worse. The latter seem just collections of individuals wallowing in pain and unhappiness, interspersed with devout feel-good tracts on “my illness” by people who are barely unwell. I hate “my illness”, I want to struggle on and try and live a normal life, not bathe in hurt and there’s something about meeting with others that I equate with surrendering to it, or normalising it. It’s all about standing on my own two feet with dignity and self-respect intact, staring Death in the face and saying “Just you try it”. Yes, I am weird - and far too stubborn.
I don’t qualify for heart transplant groups though - because they’re only for those who got lucky, got a heart and lived - not for those of us who got kicked to the kerb.
I am a health care professional and researcher increasingly interested in patient experiences. I am currently pregnant for the first time and I’ll admit that I have been amazed at how useful online forums with patient stories about their pregnancies has been. Due to my job, I don’t live near my family (my husband is with me). This has been another way for me to feel a sense of community and support. Of course this does not replace health care from a professional and there is a risk of inaccuracies, but I have found that the benefits outweigh the harms, at least for this common situation.
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or not. patients who post about their illness are often the most extremely affected and are hardly representative. I would suggest that this approach generates more harm than good for most patients. but I don't ' blog' about health care for a living but rather deliver it so what do I know.
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@poins good point! What do you know? Or more exactly what is it that you don't know that you don't know?
There is just too much knowledge to have for a single individual. Great doctors always accept knowledgeable patients as their partners. Together they can sometimes do the unexpected and greatly improve the individual odds. Doctors like you, who believe they know all, and always know better than the combined knowledge of a network of activated patients can easily be dangerous. Thankfully you may a be part of a dying breed.
And before you respond, you should know I have built over 250 online communities of cancer patients, some of which have undoubtedly saved the lives of hundreds or thousands of patients who were not told about the latest treatments by their doctors, who always believed they knew best :-)
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Dana Faber in Boston has a wonderful "One on One" program. It allows patients in treatment to connect with individuals who have formally been treated for the same form of cancer. Invaluable and comforting program.
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No doubt support and information from patients that have shared experience is invaluable but as a surgeon who along with nurse navigators try our very best to give each and every patient time and information and support, I bristle at the blanket statement that this rarely happens in America.
I have to agree here, as when I was a cancer patient my doctors were very forthcoming after they discovered that I wanted a lot of information. They took all the time we needed to explain my situation and get my questions answered, and so I felt very prepared for my treatment. However, as a participant on several internet groups devoted to this disease it's apparent to me that many patients are not very well informed. The burden for this lies on both parties, but it's up to doctors to make patients feel welcome to discuss their conditions as much as needed. But patients and their loved ones need to advocate as well. I asked questions in the groups, but ran the answers by my doctors always.
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No need to bristle .
You and the staff may do an exceptional job educating and supporting your patients .
However , when one walks out the door -with lots of information and a variety of feelings sometimes that information doesn’t stick .
Nothing like communicating with others any time day or night online, especially if anxious or depressed.
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Belonging to a patient support group on Facebook, lead me to realize I didn’t belong there. After being diagnosed with a rare heart condition, Takotsubo, not once but twice, I pursued the advice of a physician considered to be one of the world’s leading experts on the disease to get her advice (Dr. C. Noel Bairey Merz at Cedar Sinai in Los Angeles). After performing an angiogram with reactivity testing, she and Dr Janet Wei concluded I had never had it. Getting a new diagnosis, microvascular disease and cardiomyopathy with suspicion of an autoimmune connection lead me to further consultations ultimately discovering I had a rare form of Behçet’s disease. Treatment fits the diagnosis. Mine is now on the right track.
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Excellent article. Most of us know someone who has been recently diagnosed, and most of us have our own diagnosis to deal with. I found for me, the best response was to get involved as best I can. I have a par excellent specialist, and got involved in a trail being conducted, as that help's him and his team, understand how others react to treatment. The internet has opened up a vast amount of available information. One has to be ever so cautious of the validity of what you read. I have always relied on Mayo Clinic's website, and The Cleveland clinic to formulate, questions for my own Physician . As this article makes clear, patients don't get much time with their Doctors. Be prepared with written questions , organizations devoted to your disease. If possible talk live with others, who have the same diagnosis. That of course isn't always a easy find.
3
A few years ago I had adhesive capsulitis (frozen shoulder).
My doctors did not even know what it was...it took a physical therapist to actually diagnose it, and what got me thru was a Facebook group of sufferers. Better advice from people suffering thru it than from doctors.
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I have anal cancer. The treatment AND the side effects and after effects are brutal. I do not know what I would have done without the members of my anal chat group (it’s private).
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Sometimes peers know better than doctors that “… people can respond differently to treatment. What worked for us may not for you and vice versa.” Sometimes patients become experts and understand the nuances of a condition better than some in the health profession. Sometimes patients are also members of the health profession. Let’s not generalize about all peer sharing.
6
I had heart bypass surgery 13 years ago at age 55. I am a woman. I have still not met any other women who have had bypass surgery. At the time, I so wished that I had someone I could talk to about my post surgical experience. I didn’t know if my symptoms such as a loudly pounding heart, severe depression (it went away) numb left breast (it’s still partially numb) were normal or not. I am still unable to go without a bra for for than a few minutes without great discomfort. It would have been so helpful if someone who had been though it had prepared me for what to expect or shared with me their experiences. All the articles and books I found were addressed to men - I could find nothing that was written about women and bypass surgery.
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There have recently been studies of disabled veterans that strongly suggest that there are disadvantages to flying them back from the war zone to the states. In World Wars I and II our disabled returned home on troopships full of other disabled vets. The voyage home took weeks. It's now thought that those weeks together with other disabled vets were very useful and therapeutic in a way that a fast plane ride is not.
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Well-moderated forums for all manner of diseases and conditions can be found at www.inspire.com. Among the many, I've found great help from the forum for bladder cancer patients moderated by BCAN.org, and the breast cancer forum. As noted by others' comments, there is no insight quite so valuable as that from patients/mentors who have walked the road you are on.
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I'm a longtime survivor of metastatic gyn leiomyosarcoma. I'm a peer-to-peer volunteer with Imerman Angels, Friend for Life, Sarcoma Alliance and MD Anderson's MyCancerConnection. I don't want anyone with this rare disease to find themselves alone.
My survival gives hope to those with whom I'm matched. But I think the most important part of the work is to be willing to listen, up to 2 hours at a time. The more I listen, the more I hear how someone may have misunderstood what health-care professionals told them -- or didn't tell them.
I have mixed feelings about online forums. In sarcoma, at least, the forums tend to attract the newly diagnosed and those having a really rough time. People who have an easier time are less likely to stay on. New people may get scared or depressed hearing from those who are suffering a great deal.
Topics also can get trendy in forums. All it takes is for one person to get a good response from Keytruda, for example, and then everyone wants it. Right now it's CBD oil nonstop.
People putting personal information on forums such as Facebook, even if the forums are closed, should understand that there's no guarantee that this information will remain secret.
People also should be aware that they may get attacked on forums by people who disagree with them. Because that happened to me, I moved to Twitter, where it is easier to block people. That should tell you something ... because Twitter.
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I was petrified of my MS diagnosis, many years ago. I then stumbled upon an online forum for people with MS supported by Massachusetts General Hospital. Being able to converse with other "newbies" with MS had a huge impact on me. I had so many questions! Drs are too busy to answer them all. MS is very complicated and no 2 cases are the same. Being able to converse online with someone who has been through it, helped me tremendously.
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I'd like to second what "aging New Yorker" said about the helpfulness of the www.breastcancer.org website, in particular its forums, which are a great source of support and common-sense advice from women--and some men--who are or have been through the exact things you're currently facing. Thanks to the community I found there, I came to treatment with realistic ideas of what to expect at each step, and I was able to ask more informed questions of my medical team.
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Interesting article. I agree with the conclusions. I follow Aaron and Austin's blog "The Incidental Economist" daily.
I am soon to have a SAVR px (aortic valve replacement). I have a number of friends who've also undergone open heart surgery. Their stories are comforting (net, LOL). I've also attended in-person support group sessions for other issues -- e.g., my late daughter's cancer, my lovely 2015 prostate cancer dx and treatment. I've blogged at length about the latter; Google "KHIT shards".
A friend of mine, Susannah Fox, former CTO of the federal Health and Human Services Department, is working on patient peer-to-peer efforts these days. Very important. Isolation when you're struggling with life-threatening medical concerns can only make them worse (and that goes for caregivers as well).
So, yeah, if you're dealing with difficult medical problems, seek out patient peer counsel (even though you may encounter people with utterly unscientific views -- the "woo").
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Thank you. When several people independently say the same thing, there is an immense value in that experience. Sometimes it can help when your own doctor(s) come up short. I want to point to two examples from the NYT itself.
In March, there was an article in the NYT's "Ask Well" on mouth sores, where the doctors / experts essentially threw up their hands and could not say anything much about a cause or treatment. However, among the comments, a large number of readers pointed out that using a toothpaste without sodium lauryl sulfate (SLS) had cured the condition. I tried the solution, and it worked! (no doctor needed).
Second, in response to your own article about sleep apnea, one of the commenters wrote that it was a possible cause of A-Fib (atrial fibrillation), for which a cause is hard to determine. It turns out that a friend, who recently spent a week in hospital due to A-fib, is being tested for sleep apnea.
So, a good documentation of experiences, together with some statistical or "page rank" like analysis could be of immense value in diagnosing hard to treat problems.
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There has been a very active Diabetes Online Community (DOC) for many years now with a great number of useful bloggers who provide information on new technology and drug developments. For those of us with Type 1 diabetes this may be the first chance we have to 'meet' with someone else with our condition. Over the years I've found the support, friendship, and practical advice to be invaluable. Google "DOC Diabetes" to get started.
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This is true as well for elders and others who enter nursing homes for rehab and long-term care. Because of their limited mobility and other difficulties such as hearing loss and speech impairment, it can be difficult for them to speak to one another. Geriatric psychologists like myself help to give them a framework for their experiences so that they can make the most of rehab or successfully adjust to long-term care. My large-print book, The Savvy Resident's Guide, shares stories of residents so that readers understand that they're not alone in what they're encountering. Support from peers -- even peers in a book -- can be extremely reassuring.
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This is absolutely true. When I was diagnosed with breast cancer, I was (and remain) unspeakably grateful for the care I received at Memorial Sloan Kettering. But I would have had a much more difficult time without the message boards on breastcancer.org. Doctors and nurses are busy, and while sympathetic, don't have time and can't possibly answer or speak to all of our concerns. But on the message boards, I received and eventually gave advice about recovery from surgery, radiation, and chemotherapy, not to mention when hair grows back, insurance problems, pain control, and middle-of-the-night what-ifs. I gave away my hats and scarves when I no longer needed them, and I learned about where to get free breast prostheses until I was healed enough to get the real thing. Sure, there was some unbalanced and occasionally untrustworthy advice, but most of it was pretty good. Most important, there was community and support on those boards, so I didn't have to burden my family and friends with all of my (many) concerns. Whether online or in real life, patient-to-patient support can plan an incredibly important role in learning to live with a major disease.
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I have a neurological condition, Transverse Myelitis, rare enough that I will probably never physically meet anyone else with it. I have found online forums and closed Facebook groups extremely helpful, starting with the spinal cord tumor forum and group I found and participate in during the time I was misdiagnosed.
In addition to the support group function we do exchange information on treatment options, since in many cases our neurologists have also never seen or treated this. We have an international online collection of data from many different sources. Having members around the globe also provides different perspectives of diagnoses and treatment
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Discov Med. 2013 Oct;16(88):167-77.
Transverse myelitis--a review of the presentation, diagnosis, and initial management.
West TW1.
Abstract
Myelitis is a rare neurological disorder of the spinal cord that is caused by inflammation and can have devastating neurologic effects with up to two-thirds of patients having a moderate to severe degree of residual disability. Symptoms typically develop over hours or days and then worsen over a matter of days to weeks. Patients can present with sensory alteration, weakness, and autonomic dysfunction including bowel and bladder problems, temperature dysregulation, or even bouts of hypertension. Evaluation for compressive etiologies must be a priority as compressive myelopathy and transverse myelitis are often clinically indistinguishable and emergent surgical intervention is indicated in such cases. However, if neuroimaging and [cerebrospinal fluid] CSF studies indicate inflammation within the central nervous system, then a work-up for myelitis must include autoimmune, inflammatory, and infectious etiologies. Acute management of these patients is dictated by which etiology is suspected and rapid initiation of that treatment portends a more favorable patient outcome. This review will discuss a practical clinical approach to the diagnosis and acute management of patients with myelitis including clinical symptoms, the role of neuroimaging, and the utility of both CSF and serological studies in the management of these patients.
6
It strikes me that connecting with others who have a similar condition or who are undergoing a particular treatment can be of great value simply beyond informational and emotional support. How many new meds are prescribed each year only to have significant side effects identified years later?
The experience of communicating with another patient is certainly not a substitute for second opinions (if necessary) - but it may provide the support a patient needs to bring up issues with their healthcare provider.
The question is whether the healthcare provider will listen to the patients concerns - or simply do what the patient requests simply to be able to move to the next patient.
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When I was first diagnoywith non-CF bronchiectasis, I found a forum and joined it. Its members were in several different English-speaking countries. I thought this would be helpful.
Well, I guess it was in the sense that for all the criticism of the US health care system, vs national ones, I quickly learned that one better hope one is in the US if one needed an expensive percussion vest! Many countries still only recommend manual percussion. My dog is clever, but I don't think she could do this for me, I'm a widow and my daughter works very long hours and travels extensively, and my son lives across the country. I did learn how to get my percussion vest on a small plane - flight attendant with a child with CF told me how!
I have found that most of the info on any health forum I've been on, is mainly inaccurate and comes from very poorly educated people with many biases. Most do not trust doctors and absolutely believe that all drug companies are evil and trying to harm patients with their drugs. If given a choice between "eye of newt" or Cipro, they'd go with the newt!
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I also have bronchiectasis and asthma. I disagree, I have found the forums on Facebook very helpful and have become envious of other health systems especially related to expenses. I am on a drug Xolair which works wonderfully, as I am still breathing. On this site I found others who were using this drug longer. As my hair fell out in handfuls others advised to use biotin which stopped the hair loss. Now that I have been on the drug for 2 years I advise others nervous about taking the drug of the benefits. I have consults from around the globe and regularly correspond with a women in UK that is my age and had a similar history. I would delete my account on Facebook if it wasn't for these forums.
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A patient peer will never say, “I’m sorry. There’s nothing more I can do.”
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This is even more effective with conditions not well recognized by allopathic medicine, such as CFS, Chronic Lyme, and Mold Sensitivities.
14
While most of the article and comments are focused on major life-threatening illnesses, often getting to talk with person who has been-there is good for those of us who undergo what are considered normal procedures.
I've had two Total Hip Replacements. Fortunately, I got in contact with someone who had the same procedure by the same MD in the same hospital before the first surgery. That contact made a huge difference to me and I've passed along my experience to others.
It isn't always the big issues, usually it is the little things that the medical professionals gloss over. Knowing what to expect and what to be careful of makes the whole process less frightening and daunting. Knowledge is power and when you're feeling powerless it is important.
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An experimental internet support group and a disease-specific support group led to some enduring friendships in my life, albeit with people I have never met in person.
This is not much different from 12 step programs, wherein the support is shared among people who would otherwise likely never meet each other.
For many, it is a lifesaver. For those with terminal illnesses, it helps them meet it with dignity and respect.
11
There is tremendous power in peers.
Beyond just support and camaraderie, there are multiple randomized clinical trials demonstrating the efficacy of peers -- where peer support drives measurable improvements in clinical outcomes like HbA1c.
Multiple organizations, including ours -- InquisitHealth -- have been focused on scaling these efficacious peer programs from academia into actual clinical practice.
More and more forward-looking health systems and health plans are promoting these programs, especially after they see the positive impact on clinical outcomes for their patient populations.
Patients are the biggest source of untapped value in our health system. Their empathy is unparalleled. Their ability to reach and help those struggling is much needed, yet underutilized.
This is an important movement that's just getting started!
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I was immensely grateful to the Ithaca Breast Cancer Alliance, now the Cancer Resource Center. Support groups and people who had gone through the experience provided me with information and support. Their slogan is "Because no one should face cancer alone."
13
“You can get a much better sense of what it means to be a patient from another patient.”
For patients to share with other patients similar medical conditions and experiences is important and a valuable tool. But one key gift a patient can offer another, especially if a life threatening illness is one the table, is a shared sense of fear and hope.
Terror, uncertainty and "going it alone" can be paralyzing and the notion of hope may not even be on the radar. But a sharing of these feelings, doubts and fears with a patient who has been down that road can be the best emotional medicine there is. There is not only "power in sharing stories", but also a sense of relief, comfort and familiarity.
This is a wonderful and encouraging idea and a much needed article to share with the readers. I know a few people who could benefit from this "caring is sharing" approach. Thank you NYT for running this story!!
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Excellent article. Other patients can be of great help but just like with doctors some are very good and some are bad and it is all wrapped up in a de facto criminal health care system where the billionaire big pharmaceutical/HMO exec. come first and the patient second.
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Although there is benefit from receiving support from others with a similar condition, there is so much misinformation out there, whether it is intentional or not, that I, as a physician, am very concerned about anyone take others' purported experiences to heart.
For example, many people perpetuate the myth that everyone with back pain requires an MRI and only surgery can fix it, that medications for mental disorders are not only worthless but actually are very likely to be harmful, and that any condition diagnosed as a mental disorder is actually a physical disorder for which doctors haven't yet provided the proper work-up either out of ignorance, laziness, or venality.
I wouldn't trust anyone's story without their putting their name on it and, if criticizing a physician or hospital, without naming them, too. I realize this leaves someone open to libel allegations but if you have any doubt that what you are saying isn't true then you shouldn't be posting it or you should be clearly labeling it as opinion without any scientific evidence. Too many people seek to leave the impression that what they say is accepted fact with the support of such evidence when none exists.
6
But you must be able to see why people look outside the patient /provider relationship and risk inaccurate and incomplete advice.
The Provider is not giving us with the emotional support we need to cope with the medical condition we find ourselves in.
Once the tests, prescriptions and procedure have been delivered the visit is ended.
Step up provider and treat the whole patient not just the condition.
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Disease-specific patient advocacy organizations often run forums where patients can interact (they also often have the best, most reliable information about new treatments, research, etc.). The best of these forums require registration and are behind paywalls, which helps eliminate many of the trolls. I have ankylosing spondylitis and can highly recommend the patient forums at the website of the Spondylitis Association of America, spondylitis.org.
8
Patients should also be aware that some "patient advocacy groups" and social media fora are in fact products of the marketing departments of pharmaceutical companies. Be sure to read the fine print.
For many years I was a Director of a disease-specific non-profit and we had such a forum. I was the moderator for some time. There were multiple types of posts I did not publish: those advertising something, those promoting their religion, those seeking or offering a diagnosis, and those offering unprofessional medical advice. I never cease to be amazed how many people would describe their symptoms and ask us, rather than a doctor, for a diagnosis. An online group can offer a lot of emotional support, but they really do need to be monitored closely (and those posts asking inappropriate questions responded to privately). And it is often the case that those who post most frequently are the ones with the most severe cases, and readers should understand that they speak fro themselves and not all patients.
Memorial Sloane Kettering has a formalized Patient to Patient program where newly diagnosed patients can be matched with former patients with the same diagnosis. Volunteers receive training and have educational meetings. Targeted diagnosis websites are wonderful but it is so helpful to be able to talk to someone ahead of you on the cancer journey, answers all your questions, can refer you to other hospital resources. When I was diagnosed with node positive bladder cancer 18 years ago, I was able to speak to someone who has ahead of me in the chemo protocol and helped me know what to expect. Then I was able to speak to other patients who were living with the various surgical options available for living without my bladder. I am eternally grateful to those people who answered all my questions, and I have been a Patient to Patient volunteer for the last 15 years.
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MSKCC, Harvard, Roswell Park, Ohio State and other leading cancer centers have recognized the value in patients support each other through information and experience sharing and have provided their patients the opportunity to connect with others at their institutions and around the US through the www.cancerconnect.com community. This is even more helpful for individuals with uncommon cancers.
8
Anyone know of respectable forum for all those who can't get a diagnosis. The medical mystery series at the NYT is very good but there are thousands of people with unusual problems and no where left to turn for help. The big hospitals do not see people with un diagnosed illnesses.
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(My previous comment had a link in it so I fear it won't be approved so I'm reposting the gist of it.)
Based on my experience in communities of people living with mystery and/or rare conditions, you might do well to catalog all possible symptoms and look for related groups.
Here are some people and terms to search for:
Sharon Terry, founder of the Genetic Alliance, who created Disease InfoSearch, a crowd-sourced supplement to the government's rare disease information databases.
Matt Might, director of the Hugh Kaul Personalized Medicine Institute at the University of Alabama Birmingham. His son has an extremely rare genetic condition (NGLY1 deficiency) and was diagnosed thanks to Matt and other people's pioneering work.
They broke a path through the thicket and not only left breadcrumbs but a handbook for how to follow them -- or create your own path.
Good luck!
2
Chelsea, this is a great question. Based on what I've seen in the rare disease communities where I've spent time, you should catalog all the possible symptoms and consider looking for multiple groups of people who share the same sorts of challenges.
This post and the attached comments have some relevant resources: https://susannahfox.com/2018/06/29/case-study-one-in-a-million-diagnosis/
I've shared the question on Twitter so hopefully more people will chime in with ideas.
4
Thanks Susannah for the suggestions .
I wish I could hire a researcher , maybe a web service run by new doctors needing to pay off their student loans . They could provide this service for the thousands lost in our medical mess . make money and have the fun of solving the mystery..
For now if you read the NYT medical mystery stories its almost always pure luck that they find someone who has seen this disease before, always just luck or a interested researcher.
Many people think just go to Mayo or Cleveland Clinic but if you don't have a clue then they won't see you. There is no place with Dr House's team.
2