On the General Lack of Vitiligo Information

On the General Lack of Vitiligo Information

It’s nearly 3 in the morning and the only reason I’m awake is so I can get all my work done and Steve and I can go on our what-is-becoming a routine-late-August vacation tomorrow. Which essentially means that I needed a little procrastination before I get cranking again. Which led to a “short perusal” of google analytics. Which, of course, led to a whole half hour wasted. Which in its turn led to this blog post. So let me begin and stop nattering away.

I am shocked–SHOCKED–at how many hits I’m getting on various google combos of vitiligo with vitamin d, tyrosine, vitamin c, deficiency and so on. Not, you understand, that I don’t want you here or begrudge any information–quite the opposite, in fact. Welcome, grab a chair. Oh you probably already have one. I forgot; it’s appallingly late at night, or early in the morning depending on how you look at it.

No, what shocks me is that there’s very little readily accessible vitiligo information that deals with various vitamin, mineral, amino acid, yaddah yaddah deficiencies (except for the b vitamins and copper). And when anyone connects the dots and says, “Wait! Vitamin D is implicated in autoimmunity! Vitiligo is an autoimmune disease!” what they end up getting is my site. If you google vitiligo and vitamin D deficiency, I’m ninth.

That’s scary.

And it’s frustrating becuase unless you’re an obsessive researcher, you’ll probably believe what your dermatologist tells you–that protopic, corticosteroids, and so one are the only method of treatment.

So for the record, here are some guidelines for what I’ve learned about vitiligo sources (and some other general information) from my obsessive researching:

1. Pubmed is your friend. Except when you don’t understand it, which, alas, is much of the time. You can read all sorts of scientific abstracts, and if you’re in any doubt that vitamin D deficiency may cause vitiligo, please research autoimmunity and vitamin D at www.pubmed.com. There’s a mother lode. Incidentally, if you chance upon the vitamin D council web site and decide to e-mail all its research scientists whether they know of any published research between vitiligo and vitamin D, or whether they can hypothesize, I will save you the trouble. All, save one, will send you nice, short e-mails talking about a vitamin D analogue topical cream. Totally different. It was very nice of them, and they took the time out of their day. The remaining one will write you a very, very thoughtful e-mail saying that he has a grad student with vitiligo and has wondered the same thing. BTW, I was (am?) deficient in vitamin D and am taking a whopping 5,000 IU a day.

2. Vitiligosupport.com is also your friend. Although there are a lot of people who genuinely believe that rubbing unadulterated bergamot oil and then going out in the sun is a good idea, there is a lot of great info and very, very supportive people. Also, great success stories for those days when you just feel like curling up in a ball and crying. Registration is free, but the $25 bucks to be a supporting member is well worth it, just to be able to see the photo albums of people repigmenting.

3. Tyrosine is phenylalanine. A lot of naturopathic, complementary, and alternative vitiligo treatments include l-phenylalaninewith quite a bit of success. This stuff converts to l-tyrosine in your body (as well as other stuff). When tyrosine oxidizes, it reacts with copper to create melanin, i.e., pigment. Please excuse the simplistic, and probably not completely accurate, description; my point is merely that phenylalanine is often used, but it’s essentially the same thing as tyrosine. My naturopath is in love with tyrosine for whatever reason (he uses it himself), so that’s what I’m talking. I think either would work. If there’s anyone out there who can correct me, please do. I have wondered why more places just don’t go directly to the tyrosine.

4. Sunlight or nUVB. Your dermatologist will probably tell you to stay out of the sun, especially if you’re using protopic. As far as I’ve been able to tell, no treatment works without it. In fact, some studies show that b12 and folic acid with sunlight or nUVB alone work–without any of the other stuff. Getting tan sucks because it makes your spots show up more (and you see more of them), but my face has almost completely repigmented in the month that I’ve allowed myself to get sun. And we’re not talking a lot–lying out in the sun for 15-20 minutes 3-4 times a week.

5. Snake oils may work–but don’t waste your money. There are lots of “guaranteed cures” out there. Alas, with vitiligo, nothing is guaranteed, except the fact that, as one googler put it, “vitiligo sucks.” Well put. Now, I think some of these probably DO work, because as far as I can tell, they all work on the same principal: Photosensitization. Remember that whole sunlight thing? A lot of people find that if they get the spots pink, pigment starts coming back. A lot find that if they get the spots burned, it comes back even faster. Bergamot essential oil, psoralea, khalla, and a whole bunch of other stuff makes you more sensitive to sun, ergo you pink faster, ergo you repigment. Personally, I haven’t reached this frustration level yet, but who knows? I may just yet. But the point is, you can make something that will fry you to a crisp much more easily and cheaply than sending off to India for it. Plus, your packaging will probably be nicer.

6. Vitamin C confuses me. Dr. Montes (who wrote a book on a nutritional approach to vitiligo) has his patients on massive amounts of vitamin C. Over on vitiligosupport.com, I’ve discovered that many people find their spots spread with vitiligo. As for me, the jury’s still out, so I’m confused on this one.

7. Expect to educate your doctor–and never settle. I was dissatisfied with my dermatologist, which I’m discovering is far from unusual, and went to a naturopath to get complete tests. Best move ever. I love the naturopath and his resident. At this point, though, I know more about vitiligo than they do; they, quite happily concur. In fact, as they say, “You are your own best doctor.” It’s true.

8. You can always depigment. This has been strangely comforting to me, but if you get really really bad, you can always depigment. I’ve seen pictures of people who have done it, and they look pale, but not oddly so.

36 thoughts on “On the General Lack of Vitiligo Information

  1. good to see im not the only one scouring the internet. by the way, i tried bergamot oil. somehow, even though i was careful only to apply it to the white spots, the areas around it hyperpigmented. as if my skin didnt look strange enough before! im also torn on the vitamin c thing. although my wife (who is originally from ecuador) spoke with a derm in ecuador who claims a high success rate, and he uses vitamin c in his protocol. by the way, the homeopathic solution is called sepia. have you checked out “emilys vitigo” and “wanakees vitilgo” websites?

  2. web is full with Vitiligo information.. i guess 90% is confusing. Best solution is to trust your doctor. Yes homeopathic is good solution.

  3. Hi Kevin,

    I’ve noticed on my face that areas around the spots were hypopigmented before it started getting better. It’s faded, and my face is 99 percet repigmented–and evenly too. And yes! Those two sites were what got me to the naturopath in the first place. Sepia … that’s interesting, because I used to take that when I felt a UTI coming on (too much info??) I’ve gone back to taking the vitamin c because it was progressing even without it. I’ll stick with what Monte says–and your wife too.

    Bill, pretty cool site, thanks!

    pm, I don’t know how to respond to your comment, so I won’t. No offense.

  4. Hey Zia,

    Thanks for your very honest expression of your frustrations in dealing with vit. Last year I was diagnosed with vit and have suffered through similiar feelings and fears. I agree that the worst part of having vit is the not knowing and helplessness. Each morning I fear looking in the mirror and seeing a new spot and despite how much I research the condition and remain faithful to my excimer treatments, etc. I have no control or confidence that is it truly helping. I too have a wonderful partner that says it doesn’t matter to him but for some reason I can’t get past it and it has started to become an apparent problem. I just wanted to say thanks- today I didn’t feel alone.

  5. JP, your post made me teary. It really did, and even though I’ve thought about retiring the blog many times, your post alone makes it worth keeping it up. I am more glad than you can know that my posts have helped making you feel less alone. You’re not. There are others out here; the problem is that I don’t actually know anyone else in person who is going through this, and I honestly don’t think I could face a support group at this point.

    But there’s nothing worse than that helpless feeling you get when you’re avoiding the mirror, you start looking at every spot, you see it spreading despite treatment, you can’t help doing google searches, and just not KNOWING what you’re going to look like in 6 months, a year …

    So here’s a great big hug for you. How long have you been doing the excimer?

  6. lol…sorry to make you tear up. i have been doing the excimer for about ten months. it works in some parts and not others and then even worse, more crop up. it is amazing how your whole life can change in just a year. i have definitely struggled with accepting the new me. i dont want to because i feel like that is me giving up and saying this is what i will look like for the rest of my life. i def hear you about support group- i am not ready for it either.

  7. Hi: Your website has been very informative! I’m thinking about depigmenting but can’t seem to find any pictures. Do you know of any good websites or books where I can see some before and after photos?
    Thanks!

  8. Hi Liz,

    The only place that I’ve seen pix of people depigmenting is at vitiligosupport–have you tried that? You have to pay 25 to be a member and see photo albums, but it was worth it to me.

  9. Thankyou for your site and putting some info together in simple english. I too have spent hours scouring the internet with no joy. Just a question, do you know if there is a link between L-phenylalanine that is needed for repig. and listed ingredient phenylaline in diet soda. I know 3 ppl who drink copious amounts of diet soda who have all developed vit. within past 2 years. or am I just desperate for answers?

  10. We have treated my son with NUVB only and he has had fantistic results. His chest was 50% depigmented and is now almost 100% pigmented. It took about 4 months of light treatment.

    Also – once he recieved a bad sunburn on his back and then it healed, 50% of the pigment came back with it. Sunlight and NUVB work.

    We purchased a home NUVB ligtht unit from Daavlin and worked with a local dermatician who know nothing of this treatment.

    I’m from PA but went to visit Dr. Pearl Grimes in CA. She knows this treatment very well. She provided the treatment protocol to our local dermatologist.

    His hands, feet and lower legs have responded less, but chest and back are unbelievable!! We did this when he was 11. We took some time off and are not restarting to see what we can do for his legs. He just turned 13.

  11. I have vitaligo and it has gotten worse in the two and a half years. I was put on lexapro for depression and my hair became course and started thinning. They switched the depression medicine to Wellbutrin (bupropion) and found out I was also vitamin d defiant. I have been taking prescription vitamin d for 2 1/2 mos and the vitiligo is going away, YEA!!!! My hair is no longer course but I still have the thinning problem, is it the anti depressant meds or the vitamin d deficiency???

    PLEASE HELP!!!!

  12. Hi Jeannette, I’m glad to hear that the vitamin d is working out for you. Regarding the hair loss, I have no idea. Perhaps you should talk to your doctor about it?

  13. Hi there fellow sufferers. Zia, what a star you are! Well done for providing a lifeline of support and info to us depressed despairing recluses. Like someone else mentioned, when you get depressed and yu start searching the net for a cure, you sometimes find a ray of light(UVB 🙂 )/hope that makes you a bit stronger to cope. And you try to visualise the day you will get your skin colour back (when science catches up). I have suffered since 1998. Min eis accelerating so fast now, I get 1 inch size patches per month simultaneously. To say I am depressed about it is an understatement. Also got diagnosed with diabetes last year. so that aint helping. I was wondering if the other sufferers have other health problems that may create a pattern for us to see. I have quite a few: stomach ulcer, irritable bowel syndrome, migraines, retina detachment, tinnitus(ringing in ears), and diabetes type 2….Yes I am wondering why I have not killed myself by now (Faith that God will heal me before I go completely mad!). Anyway I found this book called The calcium Factor By Robert Barefoot (It used to be on Amazon/Ebay) and it enlightened me on Calcium and Vit D. I encourage everybody to look at his website which is a lifeline and Godsend of cures and info for various degenerative illness including cancer! It is: http://www.cureamerica.net

    It may save your life and others one day… Keep up the good work and I will spread the word about your research. (research is time consuming but essential) Lets hope one day, our doctors will take more interest in valid scientific evidence for cures and not fob us off with another experimental drug with more side effects than benefits.
    Sorry to moan. God bless and Love and Peace everybody!

    Dan.

  14. Zia-
    I want to share with everyone first that I have complete vitiligo (ie, no color anymore at all.) It took a long time. 8 yucky years. But now I just look, well, a bit pale. No one I meet seems to think anything is wrong with me, which is a blessing after going through the years of being spotty. Most people just think I’m Irish. If you are considering depigmenting I highly recommend it. I just use sunscreen daily and have had no problems.

    I read with interest about the vitamin D connection and admit that I am now concerned that because I have no pigment I have no way to process vitamin D as everything I read talks about how sunlight is needed for the process. I am assuming that melanin, of which I now have none, is critical to making vitamin D. I am wondering now if that is why my hair is falling out like Jeanette’s.

    Thanks for the site and the information and for providing a place to share.

    -Margo

  15. Hi Margo,

    Huge apologies for not responding sooner. I’ve kind of put the blog on the back burner for a whole bunch of reasons. I’m glad you chimed in with your experience. My own vit isn’t that bad (though in the 9 weeks I’ve been preggers, the (ahem) down there areas have gotten significantly whiter. Nowhere else. Yet. Strange. But anyway, there have been a ton of people who have written asking me what it’s like to depigment, and of course I have no idea–so your post is very welcome.

    You can take vitamin D supplements and will be fine. I don’t remember the exact process by which it’s synthesized by the body from sunlight, but I would highly recommend getting your levels checked anyway. A good supplement should do the trick. Obviously, I am not a doctor, but I’ve never heard about hair falling out as a symptom. Have you had your thyroid checked? Those of us with vit have a much higher risk of developing an autoimmune thyroid disorder (30% compared to 1-2 percent of the general public). Best of luck to you, and it’s nice to know that you look great depigmented!

  16. Hi Carrie, POOF isn’t it scary that I come up so high in the rankings? Keep in mind that it takes a looong time to get back up to normal d levels. I’m still not there (though admittedly not always good about taking my supplements). Best of luck to you!

  17. My 3 year old was just diagnosed 2 months ago and has spots only on his bum. The dermatologist told us to do nothing and just wait to see what happens. He said that the best treatments were hormonal and due to his age and the area the spots are in, that we should do nothing till the spots are on his face or on a more visible part of his body. This seems wrong to me. I don’t want to do nothing and just watch them spread. I am so new in my research of this and am finding nothing very definite as far as a preferred treatment and am so sad and disheartened. I feel like it is my responsibility to fix this for him as he is completely unaware of the problem and it has not effected his life yet. I just want to save him from the pain that I am hearing expressed by most of the people who suffer with it. He is so very beautiful, so much so that people are always stopping us to tell us how gorgeous he is, my heart is absolutely breaking thinking that he may end up very marred by these spots. I don’t want him to have to deal with this and I want to do everything I can to make these spots go away, or at least not spread.

    Out 4 year old son was diagnosed with Type 1 Diabetes two years ago. As horrible as that disease is, and believe me giving your baby needles four times a day and worrying every minute of the day about his blood sugar levels is horrible, he may affected less socially then our three year old should the three year old end up being covered in white patches. As a mom you just want to be able to heal every pain your children have and these diseases make me feel so helpless. If there were a way I could have the diabetes and vitiligo instead of my children I would in a heartbeat. Instead, I just need to find out everything I can in order to help them. I am just a bit overwhelmed by the varying information that I am finding and I really don’t know what to try.

    I am a bit lost, confused and looking for some advice.

    Thank you for listening!

  18. Hi Jacqie,

    I am so sorry you’re going through this. I’m not a doctor, I don’t play one on TV, and I really am not terribly qualified to make this leap …. but you know…both vitiligo and diabetes 1 are autoimmune diseases. I don’t know much about diabetes, so I’ll limit my discussion to the vitiligo.

    First, are you sure that it’s vitiligo? There can be other causes of hypopigmentation, particularly in children. One that springs to mind is pytiriasis alba.

    Personally, I’ve never heard of treating vitiligo with hormones, but then again, they’re coming up with new stuff all the time, and I believe that hormones are one theory about what can set off autoimmune disorders. Which of course leads to an interesting and meandering pathway about endocrine disruptors found in plastics, cosmetics, etc. But we won’t go there right now.

    What I WOULD do, however, is find yourself a good naturopath who specializes in autoimmune disorders, or a dermatologist who is open to alternative therapies. Because the sad fact is that many–by no means all–doctors consider basic supplementation with vitamins to be alternative. I don’t know if you’ve read any of my other posts on vitiligo, but I was disgusted with my own dermatologist. Drug companies don’t push vitamin D–yet one of the treatments for vitiligo spots is a topical vitamin D ointment combined with sunlight.

    Any good physician, naturopathic or otherwise, is going to run complete bloodwork. People with vitiligo are often low in B vitamins, in copper, and and so on. Also, vitamin D is HUGE. There is a growing vitamin D deficiency epidemic right now because we’ve all been so good about wearing our sunscreen. I personally feel that a deficiency is what caused my own vitiligo to emerge. So check that. Really, I would take both the kids in to a naturopath, just because there might be some other stuff going on. You asked for advice–there it is!

    Vitiligo is a very hard disease to predict–and a treatment that works for one person won’t necessarily work for another. It can be frustrating because you want it to be easy, like taking an aspirin for a headache. It’s not. So you will be frustrated. Just to warn you. Me–I’ve gotten to the point where I don’t think about it very much. I don’t much like looking at the front of my calves, because that’s where it’s worst. But anyone else? They just think it’s shaving scars. Actually, more people have it than you realize–you just don’t notice it. If you were to look at me, you would never think that I have it unless I point spots out. But that is also what can be hard about it–you just don’t know. So there is something to waiting and seeing. It could never get worse, but it’s very easy to jump to worst case scenario.

    So advice–as above, get thee to a holistic physician. Don’t stress. Don’t freak out. DO NOT go that main vitiligo support group until you’ve had some time to digest and run some bloodwork. I say that just because you feel fine going there when you’re actively working for a solution, but until you get to that point, it’s far too easy to obsess unproductively and stress yourself out.

    Big hugs, I’m sorry this ended up being such a long reply. Please check back in and let me know what happens ….

  19. Wow, thank you so much for not retirinng the blog. This information was crucial to my understanding of what may be ahead for me in the future. I went to the dermatologist today and he did not have my results yet so he can not confirm that I have vit but I do have the white spots spreading quickly, the spots don’t tan. My gynecologist told me years ago that my vitamin d levels were very low and asked me to start taking supplements asap which I did. I will be testing my levels again this week. It is crazy, so fast, I hate the mirror, well I don’t hate it, but I am finding a white spot every other day, it is insane! Thank you so much for the research and for the words of encouragement. I am going to pick up some supplements tonight! Big hug.

  20. Hi Josie,

    First off, I am so sorry you have to go through this. It’s very stressful, and then of course, you start examining every little imperfection and wondering about it. I have to say though that after the initial rush, my progression has been extremely slow. And really, your spots may not be appearing all of a sudden, they may just be more visible as the weather is getting nicer and you have a tan.

    Re the supplements: Initially they started reversing stuff, but then I got bad about taking them …. some spots have reappeared. For instance, if you look closely at my face you can see some pigmentation weirdness, but you have to look pretty hard. Honestly, the place that it’s the worst is in the nether regions, and I honestly don’t care very much about that. It doesn’t make a whit of difference to my partner. All this is to say that you shouldn’t start panicking (easier said than done) because it could never get worse. I really don’t even think about it much anymore. It is what it is, and I’m pretty fortunate that what I have is not that obvious.

    I’m a little confused about what your dermatologist is testing you for. Is he making sure that it’s not, what is it called, pytiriasis alba? (I think that’s it, but am too lazy to do a search.) It’s very cool that your gyn tested your vitamin d–so few doctors do that even now. I would highly encourage you to get someone who will check EVERYTHING.

    Best of luck, and hugs back at you–please check in again if you have the time when you find out more. …

  21. Hello,

    Another “vitty” here. I have been struggling to come to terms with my diagnoses for the last few years that I have had it, and to be honest, my case has remained fairly mild. First off, I agree that there in a general disinterest from most Dr. about the condition, after all it is “only cosmetic” right? Whatever! I have never been one to stand by the side lines, so I have taken things into my own hands regarding the research. I have found a wealth of interesting information to consider when approaching my lifestyle with vittligo.. One thing I know, is every body is different and not one thing works for everybody. I have a autoimmune thyroid disorder that worsened when I moved to a city with a significant amount of rain ( aka no sun) I also developed vittligo, within a year of moving here! I try to look at my history and life as a whole. I take an arsenal of supplements, eat a fantastically healthy diet, and I get plenty of fresh air, and I believe the result is my vittiligo has been very mild/improved. I have plenty of (layman) advise to give out given my insatiable need to research , my close friends naturopathic education, and my personal desire to solve my own health issue. Good luck to all,and lets keep the awareness going!

  22. I have a mild case of vitiligo that started about seven years ago. When it first started, some of my eyelashes turned white and then repigmented. My hairstylist dyed my eyelashes and told me this probably happened because I was enduring a huge amount of stress in personal life (which I was). I endured a lot more stress (from a horrible divorce) over the last seven years that the vitiligo spread – around my eyes and mouth, hands, groin, and the largest spot (about 4 inches wide and 2 inches tall) is at the bottom of my neck, on the upper portion of my back.
    I started using protopic about a month and a half ago and have had only a very small amount of repigmentation. My dermatologist also prescribed fluticasone (a steroid) that I have begun to use alternately with the protopic. I don’t know yet if this is working as it has only been one day. I have also just started taking Vitamin D, though I have never been tested to see if I am deficient.

    MY QUESTIONS:

    1) How much Vitamin D should I take?

    2) Will a normal tanning bed work for sunlight therapy? The narrow band UVB treatments are super expensive compared to the regular tanning places.

    3) Also, should I use sunscreen (both for being out in the sun and when in the tanning bed, if this will work)? I have always used sunscreen and am afraid not to, even in a tanning bed.

  23. Hi Elle, thanks for your comment! And sorry it took me so long to respond! It sounds like you’re in the same boat I am — that you don’t LIKE it, but that it’s not really affecting you (knock on wood) that much. All I can say is that as far as I can tell, all the autoimmunes are affected by vitamin D. I’m in Seattle, so I totally hear you on the rainy, no sun thing ….

  24. Hi Dee,

    First, I’m sorry that you’re going through what you’re going through. It sucks.

    Okay, I have to say this, and I’m sorry you’re on the receiving end of this.But it drives me crazy when people ask me for dosage advise. I can and have on this blog tell you what I take (well, have taken), what has worked for me, and my general observations. But ultimately, I am not a health care professional. I cannot possibly tell you how much vitamin D to take.

    I would encourage you either to visit a good naturopathic doctor or dermatologist/doctor who is open to “alternative” therapies (vitamins!) and get tested–and by that I mean complete bloodwork. Not all people with vitiligo have the exact same profile; some are deficient in vitamin D, some are deficient in B vitamins, some in copper …. The best way to find a solution for your particular body is to test your particular body.

    If the cost is untenable right now, there’s some good information here along with low-cost vitamin D tests:
    http://www.vitamindcouncil.org/health/deficiency/am-i-vitamin-d-deficient.shtml

    Protopic doesn’t work for everyone, and it takes a while to get going. A month and a half is actually not that much time. I would keep using it.

    I have no idea on the sunbed, but really, sunbeds just frighten me. I would probably avoid them in favor of just some unprotected exposure to the sun. Best yet, that’s free.

  25. Thanks for the informaiton Zia.

    Just curious – I am also wondering if anyone else has been told that Vitiligo is stress induced, or may be able to rationalize the body’s reaction to stress in relation to the body’s development of Vitiligo?

    On another note, I have been using a self-tanning lotion (the CVS generic brand) to cover the white spots on my face for many years now and it works great!!! This is what you call a gradual tanning lotion in that it takes several hours to see the effects of the application. I am very fair skinned and use the light-medium lotion in the winter and the medium-dark tan lotion in the summer. I apply it very precisely (only to the affected spots) with a q-tip every day. I have learned how much to use for my skin and have had to adjust the application some. I very rarely wear makeup and you can barely tell that I have vitiligo all over my face.

  26. I find your website very useful. My endocrinologist informed me yesterday that you can take up to 4,000 units per day and if you over dose calcium will build up in your kidney and it will take about a month for your body to recuperate… I just started taking 2,000 units per day and have been using protopic for 6 weeks. I have had vitiligo for about 6 years and it is progressively getting worse. I also have had thyroid disease for 26 years. I have slightly high levels of triglycerides and bad chlosestrol. I am other wise healthy. I am keeping up the protopic, adding 2,000 units of Vit. D, increasing exercise and going on a low fat diet. I currently take .100 synthroid daily. My endocrinologist was very encouraging about the Vit D research… In the past I have used different kinds of make-up to cover up the white spots. My vitiligo started on my hands and I think it could have been a reaction to the gloves I was wearing that had latex in them. My hands itched so bad and then the white spots started. Any comments on that info. But since that time white spots have showed up all over my body and my fingers and hands are almost all white. I also think stress played an important role in the acceleration of my vitiligo. So, I have just retired after 31 years in the field of education! Thanks for any comments

  27. Argh. I am SO behind on comments, aren’t I? My apologies. My blog has been overrun with all the chicken posts.

    Dee, stress is one of the contributing factors. It’s great to hear that you’ve found a way to live with it. Dianna, it’s interesting to me about your hands itching. This is probably way, way too much information, but at least it’s down in the comments, right? My vitiligo seems to be fairly stable–except in the groin area. And for the past year and a half, I’ve had chronic itching, off and on, to the point that I was convinced that I had lichen sclerosis. I still worry, though my doctor says no. And I can see the areas of depigmentation, and that the itch has moved to what is currently depigmenting. It kind of freaks me out. It’s also not terribly comfortable. Fortunately, the only person who ever sees this is my partner, and it doesn’t bother him in the slightest. Have heart too–I felt like my spots were getting worse on the protopic before they got better.

  28. Hi Zia,

    You mentioned having “pigmentation weirdness” on your face, which is only noticeable if you look hard enough. I am in a similar situation, where I’ve been to three different dermatologists – two aren’t completely convinced it’s vit, one was. Regardless, I have lighter areas (bigger than spots) emerging and spreading on my forehead, top of my head (I shave my head bald), around my eyes and have recently noticed lightening on my forearms.

    One derm I went to simply recommending I “wait and see” how it develops, but I refuse to sit idle and watch my skin get lighter and lighter (I’m Filipino, so can get a nice brown). I’ve started UVB twice a week, take many of the supplements I’ve read about and am trying to be very, very patient.

    My question for you is: what does the “pigmentation weirdness” on your face look like? Small dots? Larger areas that are light, but not white? Do the areas grow in size and spread? I guess from what I’ve read online and photos I’ve seen, vit emerge more as small circles that show up and grow and eventually connect.

    This has all been a frustrating mystery for me (and my dermatologists)…I’m a fellow Seattle-ite and I’ve noticed more and more cases of vit when I’m out and about.

    Cheers and thanks for reading!

  29. Hi Zia,

    Wonderful research and blog, thank you! I have had vitiligo for about 20 years, slowly spreading, and I have just recently started re-pigmenting while I was pregnant. My dermatologist told me that it was the body’s suppression of the immune system, not to get my hopes up, but here I am two kids later, the youngest is 15 months old and I am still re-pigmenting. My forearms and legs mostly, getting little light brown spots and then more that link together, and now the upper chest area. My face not as much, at least I don’t see much improvement. I had taken pre-natals for the past 3 years, on and off, otherwise nothing else. I do take my synthroid, .088, and had spent the past 8 months in a mostly sunny area, which could have affected my vit D levels. I was just wondering what could have caused this partial slow but steady re-pigmentation, and how can I avoid loosing it. Now we moved to Detroit, not a sunny spot, and I’m scared of starting to de-pigment again. My sister, is also afflicted by vit, and we both started getting it after a terrible emotional stress. Sorry to ramble on, I just wanted to share with you, maybe we can all put our heads together and find some sort of cure.
    Best to you, and thank you again for everything.
    Angela

  30. Hi :)…. I have Segmental Vitiligo on my face and I too noticed that my Vitiligo worsen when I stress. and I do experience itching on the spot for a few days before the patch turns white. I also have a blog that documents my journey to heal my Vitiligo, I hope it will go away eventually 🙂
    Do check it out if you have time http://www.healvitiligo.com
    Cheers,
    HealVitiligo.com

  31. I first noticed it near my groin area when I was 8 or 9 and showed to my mom who said to just ignore it, but I could see she was upset and I did not mention it again. My younger brother had developed it as a 2 year old, in response to a severe and for a long time mis-diagnosed ear infection. nearly 40% of his body developed spots..including…forearms, feet, back, legs, chest and scalp. Being indians I guess we were lucky that we have good holistic medicine practitioners. Mom did not trust the allopathic doctors seeing how they had mishandled my brothers ear infection for the longest time resulting in him unnecessarily getting 16 penicillin injections in less than a week! Papa was in the army, and someone told mom of an elderly person from the lower ranks…a subedaar or something. He was called Ram Munshi Baba and was a bit renowned as a naturopath ..a local herb doctor so to say. Mom took my brother to him. He correctly diagnosed the condition as leukoderma as it was more commonly called then. He also told mom why my bro had developed an ear infection, and it seemed the cause was that many times he slept while drinking milk and the drool would float down to his ear and this got ignored and an infection developed. He told some simple remedy including keeping the area dry and my bro was fine. I was just 5 then but I remember that in that year my religiously followed this baba’s advice and to cheer up my bro who was just a baby I would also many times undergo the treatment. It was almost like a mission with my mom and being kids our mom could really discipline us. Hats off to her. My Papa (men are always unwise and impatient..sorry but it’s true) interrupted my brother’s treatment after 11 months..he got influenced by the convent sisters who were appalled that my bro (who was utterly cute and everyone’s universal cuddable darling) refused to accept the toffees they offered him saying, my mom has told me no. They came home and told my Papa to go to Kerala (their native city) and try ayurveda. My Pa got swayed..fought with mom and took my bro their with result that my bro’s condition which had improved 90% just stopped there and then for almost 2 decades. Now he is married…and 1 year post his marriage his 4 small spots on feet (two on each foot) and 1 on back just vanished! My bro also was never as sensitive as me. But I digress. Let me tell what was the system of cure my mom followed. This Ram Munshi Baba (now we don’t know where he is..he was almost 50 some 25 years back) told mom that this condition occurs due to blood impurity and therefore total internal cleansing is required.

    So a very strict regimen started for whole family. That way my mom is a super woman and very strong. Once she determines to do something she will carry it through. My bro had to stop all salt and sugar totally. TOTALLY. Most days then even me and Papa ate saltless food just so my bro won’t cry. Actually one gets used to it. Then he was not to eat anything white. All milk and curd, mom would put a touch of turmeric. I many times would drink the same milk (though I hated milk and usually puked it out) telling my brother it was custard. Sometimes I feel kids are great troopers. Banana was allowed once or twice a week but as a camouflage to administer deworming. Hing (asafoetida) granule was pressed in the banana and mom would make us swallow the banana. Everyday in the morning we drank Spinach juice followed by 1 spoon of honey. Everyday morning and evening one spoon of Neem and Ginger juice followed by quicly putting teaspoon of honey in mouth as the juice is BITTER and pinches the throat! No wheat. Totally. Chickpea floor roti’s ( a flat fresh pan bread) were allowed. In india we call it Besan. Rice was allowed. To satisfy sweet craving mom always kept dry dates in our pockets along with walnuts and almonds. NO FRIED FOOD. NO NON VEG. NO EGG. Vitamin C was restricted. The doc said that once in a while some lemon juice could be sprinkled over the sprouts. Daily we had to eat one handful of sprouts. One helping of salad. And one fruit every evening. Could be Papaya, coconut, apple, pear etc. Besides this once a week we both..I only so my bro would not wail..were given mud baths. The mud was red in color and gotten from snake pit which some army fellows and local labourers procured for us. This mud was dissolved in tub..we were dipped in it and then had to wait precisely 30 mins..becuase this mud has ability to absorb bodies toxins but releases them after 30 mins. Then we were washed. Being kids nudity was not an issue. Getting doused on the terrace with a pipe was the fun part. 2-3 times a week..mom would put us both in huge polythenes on a mat out in the sun…put woolen plankets on top of us and cold wet towel on our face and tell us stories and encourage us to endure for 30 mins. She would change the wet towel to keep our heads cool and prevent sun stroke. When we got up almost a kilo or more of sweat collected in the polythene. My bro also used to get regular enema. All this and more I guess. I don’t why after decades I am recounting this. The result was that my brother started developing brown spots that joined together. His hair grew black again and by the time Papa jeopardized my brother was 95% cured actually. Then when I was 11 I noticed a spot appearing under my right eye. I remember going to my parents when I noticed but they brushed me away, until the spot formed full and white and they could not ignore. I know they were distressed. It was DEPRESSING for me. I was not 3, I was 11 …almost 12. I felt like..marked. Like fate was punishing me for some crime I could not understand. I became fatalistic and also I always used to be at war with mom then so I NEVER listened to her. She also had no will left to battle me. I have never to this day followed a course of treatment. My mom has tried over the years to get me on a saltless natural, raw food diet..But after 10-15 days I give up. It’s not her fault..but I somehow ..I don’t know why I cannot follow. I just fail and get excessively moody. Some weeks later I developed a small finger tip sized spot on my left collarbone. Then months later on my right eyelid and right foreleg. That for some strange reason propelled me to for a period of two weeks to really follow mom’s advice. She made me take bakuchi powder morning and evening and apply bakuchi oil and expose to sun for 5 mins daily.The spot on leg and right eyelid vanished within 2 weeks but the original spot below right eye just got itchy and flaked and same with one on collar bone. Mom said those are very sensitive areas blood does not reach well. Oh yes I forgot…regular massage of spot first with wet cotton cloth and then with dry is part of treatment. Then no more spots appeared. Now for last 18 years I live with these spots. I have never sincerely tried any treatment. No further spots appeared though I went grey in my head at 14! BUT I became a recluse as a teenager. I felt so angry and sad..Like god was deliberately making me unlucky. Now I live with the spots. MOST people tell me they don’t notice my spots. Infact a lot of friends know me for years before they ask me one day in surprise whether I burned myself under the eye and I always tell them no it’s a white spot..and how come u never noticed? They always seem shocked and say they never did. Most days it is pinkish so I guess it does not stand out. The one on the collar stays hidden by clothes..and I feel very insecure about it so I wear V necks or round necks mostly. Only at home with mom or Pa do I relax and don’t worry if it shows. EVERYONE tells me I am crazy and I agree with them intellectually BUT I still feel abnormal. Maybe very few will understand why I am so pessimistic about it. To the point that every doc from regular and holistic medicine I have met have told me that mine is the most minor case they have ever seen and I should get cured w/in 2-3 months but everytime I abandon the treatment in 2-3 weeks. I think I have a problem of moodiness and depression. Dunno..BUT I am frustrated. Now my mom says I am so big..she can’t spank me and make me listen. I will have to be self motivated. I agree with her but have not been able to make a change. And that Ram Munshi Baba had told mom that when we try holistic medicine body changes from the inside and no surface improvement can be detected for 90 days! 90 days seems so long and yet I almost avoided a 90 day regimen for 19 years! I can see what a crazy idiot I am. I am actually writing this to vent out my frustrtaion with myself and figure out what the hell is my mental block. God give me some sense!

  32. Another vitiligo sufferer here. Some of my history: had it for about 20 years now – since my early teens. Yes after a stressful time in my life. None of my 3 siblings suffer from it. I do have extended relatives with thyroid issues; I haven’t had issues but also haven’t been tested. Over the years I’ve seen countless doctors and did most of the treatments they recommended – creams, narrow band light treatments for years, etc. Little results. They each recommended different treatments (with or without sun exposure) and most said that my case isn’t that bad (which it isn’t) and that I should count myself lucky. It is difficult to feel lucky with this cosmetic disease that makes me hide my affected areas. Then I got pregnant with my son last year and actually got the best re-pigmentation I’ve ever had. Pre-natal pills maybe? I really thought – these last 20 years all I had to do to cure my vitiligo was get pregnant! No such luck. No further progress after his birth even staying on the pills. I have never perfected self tanning lotion for a cover up. It either doesn’t cover or looks too orange by the time I apply enough coats. Perhaps I will start vitamin d and hope for the best. I too have terrible days with vit and dread waking up with new spots. I’m hopeful that Australia company developing that tanning implant will be successful!

    Thanks to everyone for sharing their stories and their treatments!

  33. Ok….I only have a second to type, but want to say thank you for this blog. I have Vitiligo on my forehead, neck & hip. This is very unfortunate as I work as a cocktail waitress where the whole club is lit up with black lights =( It also doesn’t help that I have halo moles that also leads to total loss of pigmentation =( It’s a daily/nightly job for me to put on a fake tanner or the most recent of my purchases Chromelin complexion blender. I can deal with this for now, but am looking to go to the doctor for some vitamin deficiency testing. These tests are expensive so I need to know if anyone knows what supposed vitamin d deficiency to test for: 1,25 dihydroxy or Vitamin d 25 hydroxy. B1, B6, B12 ? I need any and all advice please. Also after doing the test I would like to try a regimen that has worked for someone else. Alot of the talk on here when it comes to product names & terms just comes through to me as mumbo jumbo & gets me more confused on where to go next in trying to fight this. I thought about trying the Tyrosine, but not sure how much to take & if I should do anything topical as well??? Or just start with that?? SEE!!!! I need some guidance pleeeease. I really appreciate any & all opinions. Thank you

  34. Ok so derm just got biopsy back that showed vit. but all she gave me was allergy pills that make me so sleepy and told me to stay out of the sun. I too have very low vit. D levels so they put me on 50,000 iu for 6 weeks then they will recheck levels. My vit. started on vulva area found it during my annual female exam. Also on my hands i have little water blisters that look like sun poisoning (only on hands and a few on my shins and ankles that is where the other spots have come up . Cant find any reason for them allergy meds didnt work the tiny blisters go down but never fully go away and itch like crazy then the white spots show up. My doc says that there are no good treatments and just to apply sunscreen. I will try to find a naturopath maybe they can help I am new to all this so thanks for info. The vit. groups at this point freak me out I dont want to see whats to come as this spreads. My dem thinks it will only stay in areas where the blisters are as she told me its not life threating and I needed to calm down. Uggh Thanks for this site it helps just to ramble to ppl who dont just blow it off with a so what!

  35. To add to my previous post & hope this helps someone else…..I have had thyroid disease for about 5yrs now…..& only started noticing the vitiligo appear when I changed from Armour Thyroid medication to Synthroid & my levels sent me the opposite direction to hyperthyroid. I am hoping that now getting back on Armour Thyroid & getting my levels stable will help ??? Anyone notice anything similar?

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