Thanks to everyone for sharing their stories and their treatments!

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!

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

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!

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.

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.

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.