I developed Vitiligo when I was Nine years old. It did not progress until I was in High School and college. After each of three pregnancies it rapidly got worse. At this time I also developed Hashimotis Thyroiditis and arthritis both types ( rheumatoid and osteo). I was being treated for the rheumatoid with rituxan and my skin improved. It is now all a fair complexion. But I am careful in the sun. It was like a miracle. All the years of avoiding the beach and wearing clothes to cover the spots were almost a bad dream. I hope this helps someone.
6
@Jane Vitelli thank you for sharing your treatment results. Could you recommend the doctor you worked with? Is rituxan a standard treatment for vitiligo?
1
Thank you to everyone who shared suggestions and experienced feet back. This is very helpful to me as for the last few months I have notice the vitiligo condition on various part of my body along this, my eye sight is deteriorating rapidly.
Question: I am wondering if there is a relation between Vitiligo and eye sight?
2
I have vitiligo, as did my father. He was very self-conscious about it, but then again he had very dark skin for a white person. (Family rumor has it that there is some Native American in his heritage.)
I am more fair skinned than he was, so I didn't think the condition was particularly unsightly. I resolved to ignore it. I do have a lot of sympathy for black victims like Michael Jackson. Vitiligo can be horribly disfiguring of those whose skin is black or near black.
2
My daughter, who has extremely fair skin, developed vitiligo several years ago just after college. The patches are quite large, on her chest and face. She doesn't mind it, really, and works with a dermatologist to mitigate the spread with sunscreens and shady hats, long sleeves, etc., but she sees no reason to go to any expense to reverse the visual of it - it's just who she is. My question is, does vitiligo lead to other conditions?
1
There is a clinic in Cuba that has had success in treating vitiligo. When developing a topical location for burn victims they discovered a location that could also help treat vitiligo.
The lotion is made from placenta cells. It used to require UV light treatment as well as topical application but their latest version only requires regular application.
I've used the lotion and have had some success. Unfortunately one of the effects of our ridiculous embargo of Cuba is that the lotion is not available in the US.
You have to travel to Cuba or one of Cuba's trading partners like the Dominican Republic to obtain treatment. The Cuban's now desperate for revenue used to sponsor treatment tours that involved a hotel stay, daily treatment at their clinic and a supply of the drug at an additional cost.
The most recent travel restrictions against Cuba may make even these trips problematic. But my advice is travel as cheaply as you can. Stay at an AirB&B, not a hotel and then you only have to pay the cost of the initial exam (which is about $150 US) and then the cost of the drug which is about $35 a bottle.
The amount you will need of course will depend on the area needing application. Even with daily applications it takes about six months to see appreciable results.
But they have had success and have the studies and video evidence to prove it and there are no side effects.
I wish you luck with your treatment and when you return remind congress to resend this stupid blockade.
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@Drspock
HelloDrspock, I had a connection - a person who was able to get me Melangenina but the only way it could be brought in was if it was expired. My son tried it for a while but it didn’t work for him. I do see it in the internet. Are you aware if it’s the same medicine being used in Cuba?
Thank you,
Arleen
1
@Drspock
HelloDrspock, I had a connection - a person who was able to get me Melangenina but the only way it could be brought in was if it was expired. My son tried it for a while but it didn’t work for him. I do see it in the internet. Are you aware if it’s the same medicine being used in Cuba?
Thank you,
Arleen
Thank you NYTimes editors for publishing an article about vitiligo. The more people who are familiar with vitiligo the easier it will be on those of us who have it. Less explaining, fewer side glances and whispers. It’s also provides a forum for people with vitiligo to connect. I’ve loved reading the comments here, particularly those about cutting edge research that may help not just people with vitiligo but those with other autoimmune conditions. I am, however, very disappointed that Brody chose to describe the white patches as “unsightly”. That sets us back about 50 years. I used to stress about finding makeup to hide the white patches on my face but then decided, hey this is what I look like, it’s the other person’s problem if they judge me based on the color (or lack thereof) of my skin. My dog’s a brindle, my horse is an Appaloosa and I think they’re both gorgeous. Having vitiligo patches on your skin is not “unsightly” it’s just different. I imagine that Brody was trying to add drama to the story setup, and I’m glad she chose to write about vitiligo in the first place so she gets a pass in my book. Cheers to all my fellow speckled vitiligo sisters and brothers—we are all beautiful!! If more of us give up hiding behind makeup we’ll all be better off.
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@Nina Eisenman I felt the same when I read the “unsightly” word. It stung and I was very surprised to see it in Brody’s words.
10
My 21-year-old son was recently diagnosed with vitiligo. My husband and i realized what is was before he was diagnosed, and I went in a panic worrying about the severe emotional toll it might have on him.
I started searching the internet frantically and saw some really heartbreaking stories and always the phrase "no cure". Then I came across a video of a young woman talking about how she was cured by functional medicine.
Functional medicine is looking at the whole body, not just the subsystems of what is ailing you. Each person's treatment might be different (some are allergic or intolerant of a certain type of food, others may have a hormonal imbalance, etc.). I decided to be a guinea pig and it greatly improved my heath (had chronic fatigue & severe allergies, always got sick, no more). I know functional medicine has helped some vitiligo patients. There are many doctors and books and experts. He's a nice summary of what functional medicine is: https://youtu.be/J54i3efG2Vk
Regarding my son -- he actually didn't care about the diagnosis! He doesn't seem to mind at all about what it could do to his appearance (he's on the fair side so it's not as dramatic as for darker skin tones). I'm very happy that's he's so confident, but I worry about his health and the possibility of other auto-immune diseases. I hope he will seek out functional medicine one day and improve his overall health, as I did.
1
@Amy I feel the same way as your son. I began to lose the pigment around my eyes at age 24 and looked like a raccoon! Needless to say, as a young single woman it could have been quite devastating but at least, at 58, I STILL do not have the white hair of both my Mom and her Grandfather!. Sometimes people look at my arms, I am a massage therapist, but in 30 years, I have NEVER had one person, not one, ask me if it was contagious or refuse to have me touch them. At this point I find the depigmented parts of my body fascinating. I live in Florida and my feet are almost completely white which leads people to assume I have a golf tan. For the people who are struggling emotionally, they may have struggled emotionally regardless. We all have something we do not like about ourselves. In my case it’s my flat butt! I would not take drugs to remedy this situation. I have heard about therapies over the years involving drugs. I am not a big drug taker so that avenue is not one I would choose to go down. In the ultimate twist of fate I have otherwise beautiful skin, and almost no wrinkles, naturally, a gift from the other Grandparent. I will choose to focus on my beautiful skin, pigmented or not.
7
I was 59 when vitiligo first showed up on my face. I as surprised given my age. I tried to figure out what had changed in my life to cause this to suddenly show up. The previous year I was diagnosed as being bipolar, another surprise condition at the age of 58. Somehow I thought the medication I was taking for my bipolar condition was the cause.
I went to one dermatologist who gave me a treatment of narrowband uvb with a hand wand. This went on for a few months and my condition worsened. They gave up on me. After a few months I reached out to Johns Hopkins. They prescribed a full body uvb treatment along with alternating daily applications of Tacrolmus ontment and clobetasol. I was told the full body uvb treatment would help ensure it did not show up elsewhere on my body. Slowly my pigment came back. It took a year of going twice a week but it worked. Fortunately the office where I had the treatment was close to my office so I went at lunch time.
It’s been over a year now since I stopped my treatment and fortunately it has not come back.
Best of luck to all who are searching for a solution.
8
vitiligo patches appeared on my leg when I was 17. I tried various treatments - allopathic, ayurvedic, Unani. I have chronic asthma, since I was born. Over the years I realised the treatments were too messy to continue. meanwhile the vitiligo spread, to every part of my body. My mother feared I wouldn't marry. I got several marriage proposals and married twice. I reconciled myself to the fact vitiligo would be with for life, like asthma. I am now 70, have had and continue to have a wonderful life. I'm careful about what I eat, work out thrice a week and am healthy and fit. Do I wish I didn't have vitiligo? Yes, often. Is my life over that I have it? No. I've learned to live with it having read about it, researched it and knowing the consequences of the rather painful treatments. I'm sorry people suffer, but I consider myself fortunate that I could have a much worse affliction such a deafness, blindness or be physically and mentally challenged in other ways. Iade my peace with vitiligo.
10
A true pioneer in vitiligo research is Dr. John Harris, at UMass, where he heads the Vitiligo Clinic and Research Center. He has actually determined exactly what causes the pigment-making cells to turn off. And he has also developed a treatment that enables them to resume their function and--unlike existing drugs--to keep on functioning once the treatment has stopped. I think it may be in clinical trials now. I had written an article on his research last fall. He's an incredibly insightful scientist and a very compassionate and lovely doc:
https://dermatologyfoundation.org/pdf/pubs/DF_Fall_2018_v20190103.pdf
5
This column on an autoimmune condition is so welcome -- first, because it may help people with this affliction, and second, because autoimmune ailments -- from CIDP (Chronic Inflammatory Demyelinating Polyneuropathy) to Lichen Planopilaris -- seem to be on the rise. And right now at least, so many doctors seem to say, dismissively, "We just don't know what causes (whichever autoimmune disorder it is)." Ms. Brody might encourage more research (and info sharing) by writing more often about autoimmune conditions.
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@Pat Summers
There actually is some wonderful, illuminating, research dealing with autoimmune diseases that's going on at Univ of California-San Francisco. And this research explains why autoimmune diseases tend to cluster--a person starts out with one, and develops additional ones. An immunodermatologist at UC-SF, Michael Rosenblum, has discovered that there's an inadequate number of a particular kind of immune cell, regardless of the autoimmune disease. It's a regulatory cell that normally functions to keep immune responses in the body from being too strong. And these regulatory cells also stop immune responses directed at our own cells. But when there aren't enough of these regulatory cells, autoimmune problems start to emerge. So at this point, different researchers are focusing on specific autoimmune diseases. But this guy--Michael Rosenblum--has developed an approach to restore and maintain the needed population of these regulatory immune cells. It works fabulously in mice! But still has to be tested out in people. Last time I was in touch with him, he was hoping to get that underway.
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@Sheila Haas, I am frequently in San Francisco and I would like to see Dr Rosenblum at UCSF.
I have Crohn's disease, diagnosed at age 51, and some small patches of vitiligo, most of which first appeared in 2016. I may be one of the people Dr Rosenblum would like to use for testing. Is he looking for subjects for a study, do you know?
In the novel "Black No More", a Dr. Crookman establishes clinics in the northern US (first one in Harlem) where, for $50, Black people can be treated w/ vitiligo to become white; it works just fine...(this is in the 1920s)
My son had small patches of lighter skin, but was very fair skinned in general, so it was not so noticeable. Apparently autoimmune disorders run in our family, as a variety of us have asthma, allergies and other problems.
@Barbara They run in many families, a fact I was surprised not to see in this article. My mother has vitiligo, many others over several generation have or have had allergies, asthma, thyroid dysfunction, and other immune system disorders.
The article that needs to be written is one that discusses the real change needed for people with vitiligo: not their skin color, but society’s perception and judgement of vitiligo. Calling vitiligo “unsightly” is offensive and implies that people with vitiligo need to change their skin in order to be beautiful. I understand that for many people, having vitiligo makes it very difficult to function in this world, emotionally and otherwise. But the answer is not to change people’s skin; it’s to educate, accept, and empower.
I do not have vitiligo, and therefore will not speak to it directly. Instead, I will speak about my own experience with my body size. Of course, being overweight and having vitiligo are extremely different experiences, but I hope that my comment might help elucidate this article for readers. As an overweight woman, I experience daily emotional and psychological distress because of my size. But for me, especially as someone recovering from a binge eating disorder, the answer is not diets and weight loss supplements and extreme exercise. I shouldn’t need to experience emotional turmoil or use “treatments” in order to change my size, and neither should people with vitiligo. Their skin is just as valid as anybody else’s. The answer is not to change people’s bodies, but to work hard to create a world in which people of all colors and shapes are accepted. No one should feel the need to change their body just because they don’t look like the norm.
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@Micaela Rosen
You are correct. Overweight is absolutely not the same. You have a choice. We do not. Secondly we absolutely have the right to want to change our skin to its natural and original one color. This is an example of why people not wearing the shoes should be mindful of their comments.
3
No one seems to have mentioned Winnie Harlow, a spectacularly beautiful woman with vitiligo. Rather than start the article with ‘unsightly ‘ you might have mentioned her and then written how some people suffer but they could draw on her success as a beacon of hope and acceptance
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@Naomi Sarna
Ehhh...she struggled and struggles. Money is being made inlike the average person trying to survive but cant even get a cashier job because of their physical appearance. MJ and Winnie are outliers...not the norm and even MJ did not embrace it
3
I have seen patients who improved or stopped the process by leaving out all dairy. Dairy is a highly inflammatory food.
1
Really? Sounds dubious and anecdotal. Last thing we need is more false hopes.
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@Nina Eisenman
What? She's telling us what she's seen. Geez. Don't have to try it.
2
Starting the article by describing vitiligo as "unsightly" is counter-productive and offensive, definitely not thoughtful. I hope everyone who wants treatment for the condition gets it, but it doesn't even look bad, just different. It's really backward to begin an article which illuminates the potentially negative mental effects of this condition with such a subjective and closed-minded description.
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Amazing, right? “Unsightly”??? Lame.
2
@Adam
Well it is for some. It's disfiguring isn't it? Maybe yours is not but alot are. IJS
2
I developed vitiligo in 2007 - rings around both eyes, ring around my mouth, large irregular spots on both cheeks, a spot on my forehead, ring around my neck and bit on my arm. After 12 years I have regained all the pigmentation on my arm and around my mouth, a lot on my forehead, and about 97% of the pigmentation on my cheeks. Pigmentation is still re-connecting on my cheeks and I am seeing it return on the outer corners of my eyes. It has been slow, but quite remarkable. I can finally wear regular foundation and concealer make-up and no one can tell. To what do I attribute the re-pigmentation? My diet and getting minimal exposure (15-30 minutes several times per week) to natural sunlight without sunscreen.
After developing vitiligo, I was diagnosed with severe allergies to milk, foods in the mustard family, and bell peppers. It was not too difficult to avoid peppers and the mustard family, but milk is in just about all processed foods (read the labels). Milk made me cough constantly and my throat close up. I had multiple endoscopy procedures to stretch it open. That motivated me to make every effort to avoid milk. I started preparing vegan recipes. I saw a huge improvement in my health and especially my skin. It took about 4 years to convert to a total whole food, plant based diet and that kicked the re-pigmentation into high gear -- years after my diagnosis. I am still seeing re-pigmentation. I really believe my WFPB diet and exposure to sun are key.
15
I also have a bad reaction to peppers, interesting.
@NoDairyTerry Hi Terry! How were you diagnosed for your food allergies? Did you take a food intolerance test?
@Nina Eisenman Very I
interesting! I do as well.... and it’s very uncommon to meet others. I’ve experienced a very small amount of repigmentation on areas that are most likely to be exposed to sun after cutting out dairy and going on the FOD Maps diet (vitiligo not being the catalyst). It’s been a few years with my diet changes and the amount of pigment gained is subtle. I’ve started narrowband uvb treatments from home very recently and hoping that it will help.
1
I've known Stella Pavlides for many years, long before there were support groups for people living with vitiligo. I applaud all that she has done to make a difference in the lives of children & their families who often struggle. As a dermatologist devoted to treating & managing vitiligo in children & adults for decades, I’ve seen the depths of despair/devastation that can burden lives. Existing treatments can be effective over time with patience & we're seeing promising results in terms of new treatments, as I reported on recently in the Advances in Dermatology CME Symposium hosted by NYU Post-Grad Medical School & Dept. of Dermatology. However, the need for awareness, support & coping skills remains constant as the game-changing piece of the vitiligo puzzle. We’ve come so far, but there's much more to be done. Case in point: while traveling to/from Houston this past wkend for World Vitiligo Day Conf. to present “Coping with Vitiligo: After the Diagnosis,”—focusing on the power of support —serendipitously, I saw that my TSA agent at IAH & the woman exiting the plane in LA had vitiligo, but neither knew what it was, or that treatments & support were available. While we've made great progress, through orgs like Sheila's AVRF, the Global Vitiligo Foundation, Vitiligo Research Foundation, Vitiligo Support Int'l & others, more work is needed. Through continued efforts, we can change the landscape & help improve the lives of those living with vitiligo. Thank you to all who help.
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@Dr. Pearl E. Grimes
Thank you Dr Grimes. Good to see you and Dr Harris posting here witj your valuable input.
I wonder if a whole food, plant-based diet would help as it does with other autoimmune conditions. The symptoms of MS, lupus, rheumatoid arthritis, for example, can be alleviated this way.
4
@Dave there is no scientific basis for your claim. Don’t promote false information.
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People affected by vitiligo are increasingly finding their voce. The June 21-23 vitiligo weekend in Huston clearly show this. The vitiligo community displays pride and joy as they come together and share about their journey. Surviving vitiligo may be tough, but it makes you stronger on quite a few levels. As you over win the hardship, you start building on your strengths as a human being.
Vitiligo pride has not gone unnoticed. Clinicians see it; scientists see it; most lately even investors see it. The medical community has woken up, addressing vitiligo from a number of perspectives:
Dr. John Harris Lab out of Boston has spun out two new approaches. JAK inhibitors are being approved to address vitiligo, and IL15 is being used to target resident T Cells (responsible for attacking pigment cells). Temprian Therapeutics, an offspring of the lab of Dr. Caroline Le Poole at Northwestern, is using a modified heat shock protein HSP70i to address the triggering of vitiligo at its root. Laura Bosworth, CEO at TeVido BioDivices is bringing to life a novel way to make transplanted pigment cells go way further as skin grafts.
As the methodologies under development are largely complementary, clinicians will have a lot to choose from five years down the road. As treating vitiligo requires arresting the disease, as well as the stimulation of repigmentation, all of the above approaches clearly have their niche to fill.
5
I “caught” vitiligo on a three-week hiking trip in the Adirondacks in 1984. Parts of my legs and hands turned bright pink and became raised, like scars. When the swelling retreated, there was no pigment remaining. The vitiligo disappeared from my legs, but my hair grayed rapidly after that.
In 2008, 22 years later, I developed conspicuous vitiligo on my face. It gradually disappeared in spring/summer of 2009, when I wore a hat and took daily ten-mile walks from Bath Beach to Coney Island, Brighton Beach, and Sheepshead Bay & back again. I guess it was the UV exposure along with the hat; I’ll probably never know, but I’m happy to no longer have facial vitiligo.
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@BlueMountainMan none of that sounds like Vitiligo and it doesn’t come and go.
3
@Kim
I’ve been diagnosed with vitiligo by 4 separate physicians. UV treatment has been effective for some patients; it would seem I accidentally got the right dose on my face. My hands are a different matter, missing pigment in many places.
“Its expression is often provoked by a physical, physiological or emotional stress, like a sunburn, certain chemical exposures, a car accident or a divorce.”
Sounds like something other than vitiligo.
1
Referring to the skin changes as "unsightly" is not a good way to start the article.
24
@Ellen Oh geez. It is isn't it? Who wants to debate that? Here we go.......
1
I’m 19 and was diagnosed with vitiligo when I was 7; since then it has grown and is now on my feet, legs, hands, arms, chest, certain areas of my face, etc. It was something that I had trouble getting used to and I ended up going into a deep depression for almost 5 years because of it. It’s always good to have people that love and support you. If I hadn’t had my mother telling me I was beautiful even when I didn’t feel like it, or not allowing me to hide my skin even when I wanted to, I probably wouldn’t have made it. Going to dermatologists and having so many different creams and treatments took a toll on me and honestly did more harm than good because I was expecting results that never came. I eventually stopped going and made the decision to start loving myself. Now, I hardly notice that I have it. For anyone going through it with vitiligo right now, I want you to know that it gets better. I want you to know that you are beautiful. I want you to know that although you have lost your pigment, you haven’t lost your purpose in life. Keep your head up and keep pushing because whether you know it or not, you’re an inspiration, so keep on inspiring!
70
@Yasmine your awesome. Stay beautiful.
12
Hi Yasmine,
Your reply left me speechless. I am a member of the vitiligo tribe, and some days I just feel ugly. Other days I don't even remember I have it. Your comments are a beautiful reminder that vitiligo is exterior only; who we are on the inside is what counts the most. Confidence is powerful. I've never seen you, but I bet you radiate.
16
@Jennifer thank you! I know exactly how you feel. It’s easy to forget that our vitiligo is only skin deep (literally), and we sometimes define ourselves by it. What has always helped me on the days that I feel down, is reminding myself that there are little girls and boys out there that need us to be fearless. To show them that they are beautiful and are going to be okay. It isn’t always easy, but I always find that I have more good days than bad!
9
I have vitiligo and I believe it is a symptom of something else going on. If you have it consider getting checked for food intolerances (like gluten) and heavy metal possibly from mercury caused by vaccines or silver fillings. Also just because it may not be contagious doesn’t mean it’s not caused by microorganisms. Overuse of antibiotics can play a role. It could be your microbiome is off balance or you have a fungus. I wonder how the microbiome of Vitiligo skin would compare with other healthy skin under the most powerful microscope.
5
I have several autoimmune disorders (Hashimoto's disease, arthritis, years ago a bout of fibromyalgia) and after menopause started to get vitiligo on my hands and face. I have found that the facial vitiligo can be pushed back in three ways: low-dose estrogen supplementation; use of cortisone cream after sun exposure; taking aspirin after sun exposure. A mineral-based cream available from a compounding pharmacist, pseudocatalase, to be used after sun exposure, also helps. Autoimmune disorders seem to have highly individual etiologies, but if you first began to experience it after menopause, these things may help.
10
I started developing vitiligo patches 6 months back. And I went to a homeopathy doctor here in Melbourne, Australia. And I am free of vitiligo for now. I think it is stress induced, at least mine was. I am aware that a lot of people think that homeopathy doesnt work, but it does.
Google 'homeopathy vitiligo cure'
10
The placebo effect has cured many people. Stress does affect the body in many terrible ways. If homeopathy is your sugar pill, better that than harsh side effects of pharmaceuticals.
3
@Frank. Than it was not likely Vitiligo. Probably tinea versia
2
Also, it would be beneficial to have more fashion models, actors and actresses with the condition. A sitcom or other regular TV or netflix series could use this vehicle to educate the public about this non-contagious condition.
5
@Denny Kim Kardashian did a photo shoot w/a woman who had it all over her face. KK's daughter thought the woman was beautiful and so did Kim.
Autoimmune diseases are far more prevalent than many people realize. As someone with a form of autoimmune arthritis classified for 60 of my 70 years as rheumatoid; alopecia that has gone from areata to totalis and now seems to be going back again; and recently, finally, diagnosed psoriasis, my hope is that the research into any of these and related diseases will illuminate some of the complexities involving others. MS, lupus, type 1 diabetes are all among the diseases classified as autoimmune.
The fact that our auto immune systems can go haywire so often to create such a range of maladies from skin conditions to potentially fatal diseases reminds me of the vagaries of cancer. It suggests that just as cancer has been examined both globally and specifically to better understand and treat the varieties of manifestations, so too is a similar approach absolutely necessary in dealing with autoimmune conditions.
And I would imagine that better understanding autoimmune diseases resulting from an overactive immune system may help in the efforts to cure and treat AIDS, a disease that carries its relation to the immune system’s malfunctioning in its name: AutoImmune Deficiency Syndrome.
13
@NYCAB AIDS means Acquired Immunodeficiency Syndrome.
10
Cuban doctors have been curing vitiligo for close to 20 yrs. Not treating, CURING. Another reason to end the embargo!
15
Do tell us how...
6
Wow- please tell us all how!
4
Really...?
4
Amazing that the article did not mention anything about Clinuvel and Scenesse. It has already been approved in Australia and the European Union. FDA review is scheduled for October of this year.
8
@Fred Scenesse is not approved for vitiligo, but a different skin disease called porphyria. Two small trials have been done in vitiligo with some promising results, but it is not close to approval for vitiligo.
1
@John Harris do you recommend, have knowledge of, or use the drugs mentioned in the article above? I very much appreciate your input here.
I am a light olive skinned woman who had an area of vitiligo on the inside of my upper arm. It was not easily visible and has since disappeared. I also have several small patches of darker skin on my body including a small one on near my eyebrow. My mother had two episodes of alopecia areata, one following surgery. I have had one incidence of alopecia areata following childbirth. Both my mother and myself were treated with steroid injections and hair regrew in the affected areas. I have taken statins for a long time and they may have prevented further episodes.But clearly in my case, it appears to be an inherited disorder.
3
I, too, started exhibiting vitiligo (brown patches) first on my face, elbows, behind the knees in my mid-30s. I am now 73, and it has spread. I always laugh when I think of my grandson saying some years back, "Gram, you need to jump in the tub!"
It circles my neck and chest where it was exposed to bad sunburns while out walking and wearing a scoop-necked shirt. I attribute (although it may also be genetic) my vitiligo to having very fair skin and trying unsuccessfully for years to get a tan. Now I have that tan, but in patches!
I stay out of the sun, wear pants and a long-sleeved shirt/hat to the beach the few times I've gone. Get wet first to stay cool. No problem I feel no pain, and I'm ALIVE and WELL and lookin' good in spite of skin!
18
@Christa not Vitiligo. Vitiligo
1
@Christa
Brown is melasma or hyperpigmentation....not vitiligo. Vitiligo is light or white or pink. Sometimes grey blue in rare cases.
4
I know this is not the only instance in life of kids being cruel, but Ms. Pavlides' recounting of being spit on and beaten by other children was devastating. Who raises these children with such warped ideas of social behavior? In whose home is this considered acceptable?
The questions are rhetorical, but the anger and sadness they convey is very real.
48
My dermatologist has not shared these possible remedies, but I use a topical which seems to help. I'll send her this article.
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@Eero
Do you mind sharing the name?
Look forward to seeing the name of the medication or lotion your dermatologist prescribed.
Great to read this updated article about vitiligo! Indeed, we know so much more about what causes it than we did 18 years ago when the first article was published. The timing is excellent, because World Vitiligo Day is tomorrow, June 25th, and we just celebrated with over 300 individuals this past weekend in Houston, Texas.
The newest research has prompted the first clinical trials in vitiligo, and we just announced the results from one successful trial last week in Milan! More trials to come, and soon we will have safe and effective therapies for this disease.
However, while new treatments are on the horizon, sadly some insurance companies are denying coverage for their customers. In fact, the Tufts Commercial Healthcare policy in Massachusetts says they won't cover "skin tags, spider veins, or VITILIGO" - crazy! Need to call attention to this and get them to reconsider this discrimination against what is clearly an autoimmune disease of the skin.
Thanks to Ms. Brody for taking the time to call attention to this important disease, with significant impact on those who are affected. The time is now!!!
30
@John Harris Amen
Another thought: where vitiligo can't be cured and the person is feeling sad/self conscious about it, can the emotions be flipped by flaunting the difference rather than trying to hide it?
People use tattoos to individualize themselves and stand out from the crowd. (For example I've seen people with terrible scars use tattooing to claim and beautify the area of damage.) I had one young patient with an entire belt of vitiligo around his/her (not saying) waist. It was quiet lovely, in the way the patterns of a paint pony can be lovely, though of course I didn't say this. I referred him/her to a dermatologist and recommended more vitamin D while he waited for his appointment.
But I thought, if it were me, I'd have used those twining patches of snowy white as the background for a beautiful tattoo--a twining dragon or a chain of flowers.
If you can't look like everyone else, then dare to be unique!
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@PNRN
I think we're getting there - Winnie Harlow is a fashion model with vitiligo, having appeared in several magazines, advertising campaigns, and even the Victoria's Secret Fashion Show. Representation matters.
13
@PNRN
Actually, tattoos can do exactly that, as long as their purpose isn't to cover the spot to make it look like it isn't there. That doesn't work well, and leads to problems.
But there are many other ways to see the beauty in vitiligo, including tattoos or highlighting the spots with regular ballpoint pen. There are some cool images here: https://www.umassmed.edu/vitiligo/blog/blog-posts1/2015/march/tattoos-and-vitiligo/
7
The problem, though, is that vitiligo is not static. I’ve had an archipelago on my hip that trails into my inner thigh. Islands rise and fall. Merge and separate. I suppose I could add a compass rose...
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I have had vitiligo for over 10 years and started on a regimen of UVB (3 days a week) . The UVB was harsh and lead to burned skin and discomfort. I stopped and turned to an application of 1% pimecrolimus cream (Elidel) twice a day (only on my face). Complete repigmentation by 3 weeks. Now I simply use a single application to forehead and around lips once every two weeks. There are a couple of residual clear areas, but no complaints! At $2000/month for tofacitinib (of course drug companies want to rip you off), there are alternative, less expensive ways of treating the condition (not a 'disease").
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I'm 55 and have vitiligo. I developed it after I contracted a severe case of chicken pox at age 35, with spots starting about a year after having chicken pox. I also developed of couple other autoimmune disorders: alopecia areata and Sjogren's Syndrome.
Symptoms of all 3 of these autoimmune conditions started appearing within a year of having chicken pox. I've always suspected a connection.
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@Larry
That's very interesting. Does that mean you didn't receive the usual childhood vaccinations?
2
The chickenpox vaccine was not available to this person when she was a child It started in the US in 1995 Adults typically did not get the vaccine as most adults had been exposed, even if they were never symptomatic
Stop trying to blame this woman for her illness
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@Remy
Larry is 55. The chickenpox vaccine wasn’t available when he was a child.
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My vitiligo has
been successfully treated with UVB light
on all areas except hands and feet. Although not completely gone, it no longer draws attention. I would highly recommend the treatments - they have no down side - as a much easier, more practical alternative to covering and making up.
13
An uncle of mine had vitiligo and wore makeup on his face. Most of the family didn't know he had this condition, and I don't think most of his friends or business associates knew. His arms were moderately affected and he usually wore long-sleeve shirts. He lived well into his 80s and never discussed vitiligo. The few times I asked him about it he just shrugged and said "it's not fatal and it's not contagious."
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@TM
My Mom had vitiligo also. She made up her face and it covered well. The only time she covered up was when she went to the beach. She wore sun resistant long sleeves, pants, sat under an umbrella with a towel over it. and covered her feet with a towel. Living in Florida, the rest of the time she dressed based on the weather and never covered it. She responded to the questions of children the same way your uncle did and they accepted it with no problems. Fortunately, she never had any psychological reaction. She was a beautiful woman until the day she died at the age of 88.
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@ExPatMX, my mother in law developed vitiligo after a bad sunburn around age 20 and was too self conscious to be seen in a bathing suit thereafter. She also had thyroid disease and later diabetes. She died in her mid 80s with beautiful skin, not a wrinkle to be seen, after decades of avoiding the sun - there was a lesson for me in that, and I no longer risk sunburns trying to tan. My husband also has vitiligo but his is blotchier (hers was complete) and unfortunately affected the top of his head where his white hair is increasingly thin but it’s hard to apply sunscreen.
7
The Sierra Leonean-American ballerina, Michaela DePrince, has vitiligo. She was just a tiny toddler in war-torn Sierra Leone when she had to go to an orphanage because she lost her parents in the war. There she was marked as an outcast because of her skin condition and considered unadoptable. A picture of a ballerina helped her through what was a terrible existence. Thankfully, she was adopted by an American couple when she was four years old. Her story is heartbreaking and triumphant. And today she’s a beautiful, strong dancer with the Dutch National Ballet.
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My husband cured his (as in his skin returned to the original pigment) with diet. We follow Plant Paradox.
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@SM
Thanks for bring up nutrition. I have had the start of it--with faint fairer patch on my skin and with various supplement, change in diet and exercise it went away. Now it is coming back so I am investigating what I did earlier.
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@SM
I was wondering about nutrition, too. Dr Valter Longo's Fast Mimicking Diet appears to be helping some autoimmune conditions such as MS. See more at createcures.org or look up his studies on PubMed.
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As someone who has lived with vitiligo for over a decade, I was shocked at how the author describes vitiligo in this article as a “disease,” a word that denotes a pathological condition.
Vitiligo is not a “disease” in any conventional sense. It may be linked to other autoimmune conditions, like eczema and psoriasis, but the worst that it can do is create discolored patches on your body. There is no pain and no threat to life or limb. That’s hardly a disease.
I’ve come to embrace my vitiligo, not hide myself or live in shame because of it. Not only because it makes me look more interesting — it’s a fantastic ice breaker — but because there is nothing I can do about it. It’s in my genes. It’s a part of me.
I wish that this was the message promoted by medical professionals. It is so much healthier (not to mention less expensive) than promoting surgical procedures and pharmaceutical regimens as “solutions” to a nonexistent problem.
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Thank you for this very interesting outlook on what we define as "disease". You seem to see vitiligo as a change in the skin colour but why would we not just see "pain... threat to life or limb" as natural changes too? Something important, drastic, has happened - expressing itself in a change of skin colour, in a pain, in a growth...it is that "cause" that seems important to me. As you rightly suggested, focusing on eliminating the symptom which symptomatic medicine focuses on, gives no insight whatsoever on all the causes of the majority of diseases ranging from auto-immune diseases to atopia or cancers. “We now have a much better understanding of the immunological pathways involved in vitiligo” is really of no use in understanding why “physical, physiological or emotional stress” was so intense for biology to switch. This is where only patients can “see” their disease – as you rightly suggested, if they don’t escape it with “treatments” or concerns about stigma ...but also, I’d suggest, if they do not remain blind to a symptom telling an important story. In French disease is called maladie – mal (illness) a dit (said)...as if it was something to be listened to. Thank you for sharing your views, they were precious to me
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@David S. thank you for speaking up. at one point i tried the cytokine blocker topical treatment - it succeeded in focusing my attention on something that was not changing. and didn't need to. sunblock and short sleeves for me.
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@David S. I totally agree. I am a 74 yo vitiligo veteran, and have always embraced a similar positive life-view. I've never felt it was a disease, it just made me slightly different. Mine started in teen years and increased and spread for another 40 years. Sunburn is the worst hazard, but this is so for all fair-skinned people, When I encounter another person with vitiligo I always say, "Oh, I see we are brothers of the skin."
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No mention of Winnie Harlow, the stunning and very successful international model with very pronounced case of vitiligo?
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@David S.
Yes, I thought that was a glaring omission too, as I think she’s the most well-known person who has vitiligo now.
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@David S. Who? (I think it's ok not to mention every minor celebrity who has a particular disorder)
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@Rachel S.
Harlow is not a minor celebrity. She’s one of the most famous fashion models in the world. Google her. And as another writer commented, she might be the most famous person with vitiligo in the world at the moment.
Also: vitiligo is not a disorder. It’s a condition that manifests as loss of skin pigmentation. Saying “disorder” makes it sound serious. But the only thing “serious” about it is the shocking level of intolerance of physical difference that it highlights in the general population, and the self-hate that encourages people to spend thousands of dollars and countless hours trying to “fix” something that doesn’t need to be “fixed.” It’s our compulsive need for perfection and normalcy that makes vitiligo a “disorder” and a “disease.”
15