Why this exists

1993 · Illinois

The diagnosis

I grew up in Bangalore and came to the United States for college. I was at Illinois State University, in Bloomington-Normal, when the white patches started. It followed two rounds of Accutane for acne.

The dermatologist told me there was no treatment, no cure, that it was lifelong, and that it would keep spreading. All of that was more or less accurate for what was known at the time. What I remember twenty-seven years later is not the content. It is that it was delivered without a shred of empathy, in about ninety seconds, to a nineteen-year-old who had walked in about acne.

I left that room devastated, with no idea what to do next and nobody to ask.

The same week

Recognition

My mother had it too. I had never known. Hers was minimal — a small area around her lips that I had always assumed was a burn from hot coffee. It was not until I had a name for my own that I understood what I had been looking at my whole life. My maternal grandfather had it as well.

Nobody had hidden it from me. There had simply never been a reason to say the word.

1993 to now

Everything I tried

Topical steroids. Protopic. Elidel — which, on the skin around my eyes and lips, would warm up and seep, and make my eyes burn and water. That is not a side effect anyone warned me about, and it is the kind of thing that decides whether you actually stay on a treatment.

Switra Niwarane, an Ayurvedic regimen my mother sourced from Bangalore — pills, plus a powder I ground with lemon juice and applied before sitting in the morning or evening sun, as its instructions directed. When I later read about the history of phototherapy, I recognised what I had been doing: a home version of something people have been doing with plants and sunlight for a very long time.

Excimer laser on a few spots, which did nothing for me. Then narrowband UVB — first a handheld Dr. Hönle Dermalight 80 comb, later a National Biological Panosol panel that still stands in my house. It has a key-operated timer, and when the treatments run down I have to call my dermatologist for a refill code.

And surgery. Around 2010 to 2012 I flew to New Delhi for melanocyte transplants — twice, on both hands and my upper lip. It worked, for a while. Then it faded. It never quite matched.

I am not telling you to try any of this. Several of these were off-label, some had no evidence behind them, and one of them I would now want to ask a dermatologist about before combining with phototherapy at all. That is rather the point of this website.

The other work

Trying to help it along

I joined Vitiligo Support International and gave what I could, hoping research would find something. I still think about the people who kept that forum alive out of their own pockets. I went to a gathering in Chicago. I took part in a skin biopsy research program with Dr. Caroline Le Poole, and talked my mother into taking part too. I flew to California to see Dr. Pearl Grimes.

What I mostly learned is that vitiligo sat in a gap. Not enough patients, not enough revenue, not enough commercial reason for anyone to develop a drug for it specifically. Most of what we had was borrowed from psoriasis and used off-label.

The part that took longest

Acceptance

For years I covered up. Long sleeves and long trousers through Midwestern summers. Collared shirts. Kajal on my lip to make it less obvious. I went to a studio in New York that colour-matched my skin and airbrushed pigment onto it — which smudges, as you would expect.

My wife is the reason I stopped. She kept telling me to wear shorts. Eventually I did.

Two things turned out to be true at the same time, and I wish someone had told me this at nineteen: accepting how you look is the most important thing you will do, and it does not require you to stop treating. I still track, I still treat, and I no longer organise my wardrobe around it. Both.

Now

Why I built this

Looking back, the thing that cost me most was not the condition. It was arriving at appointment after appointment with no record, no vocabulary, and no specific questions — and leaving with a plan I did not really understand.

A few of my dermatologists were wonderful. Most were not proactive with the evidence that existed. I do not think that makes them bad doctors. I think a fifteen-minute appointment with an unprepared patient is a bad format, and the person with the most to gain from fixing it is the patient.

So this site exists to get you to that appointment prepared. It will not tell you a dose, it will not pick a device for you, and it will not promise you anything. What it will do is explain what is actually known, show you where the evidence stops, and hand you the questions worth asking.

I am also more hopeful than I was at thirty. Not because a cure is around the corner — I stopped expecting that a long time ago. Because the economics that kept vitiligo unattractive to develop for are the same economics that AI-assisted discovery and trial design are now changing. If you are sixteen and reading this with patches on your hands: that field is going to need people, and you have a reason to be in it that most of your classmates do not.