Jul-Aug '08 | briefing | mail | interviews | articlespsorchat |  don't say this | flaker creativity | flakers' jargon | other places | archives | send mail | ed dewkesearch | acknowledgments | legal stuff | Flake: Confessions of a Psoriatic  | 2008 Ed Dewke

Vitiligo Issues
from Sermin H.

Hi Ed: I’ve had vitiligo covering about 13% of my body for around 13-14 years. I have been using psoralen for the last 2 months; my face is about 85% covered [with vitiligo]. I’m living in St. Croix, so it is sunny all year. Of course it rains some times, which give us breaks from the constant sunshine.

I began to see good signs after my eighth treatment. My procedure is to take 2 pills, wait an hour, and then sun bathe for 45-50 minutes (turning every 10 minutes, front, 2 sides and back). I’ve many freckles on my legs, elbows and hips. I’m just afraid of getting some bad news from this treatment so am not so sure about continuing. I still have 25 pills so could do this for more than a month more. But should I? I use sun block and wear sun glasses, but the psoralen is supposed to increase my sensitivity to sunlight. What do you think about my situation?

Also, I want to learn more about what are you doing for your vitiligo. Do any of the meds for psoriasis you write about help the vitiligo?

There is a shop here based on organic ingredients and treatments it called Health Conscious and last week the manager of the shop told me to use Oreganol super strength 3 drops in a glass of water 3 times a day. He is the guy who runs that shop. People seek his consultation by appointment at, I understand, $70 an hour. Anyway he is an old guy and looks very knowledgeable. I would try the Oreganol, but it’s very expensive — $83 for 40 fluid ounce bottle — but I’ve found it on the Internet for $26. I may order some after I’ve done more research.

Thank you for your time and consideration. Best Regards, -Sermin H.

*****

Ed’s Response: Thanks for writing Sermin. (Other readers, Sermin is inquiring about vitiligo after having read about my case in Chapter 1 of Flake: Confessions of a Psoriatic.)

Though I consider my vitiligo experience something like a prelude to my psoriasis, my case was mild compared to yours, Sermin, and probably never as bothersome. My skin has always been pale, and the vitiligo noticeable only if the unaffected skin in plain view got tanned — then the white patches of vitiligo would stand out.

To be honest, these days I’m not even sure my vitiligo is still “there.” After becoming a flaker, I began to cover up all the places I’d formerly had V-patches. That meant the skin never got tanned, the patches never “stood out.”

As far as I know, none of the meds I’ve tried for P are used to treat vitiligo except, perhaps, psoralen. It is used as a part of PUVA therapy for P. The initials stand for “Psoralen + UVA light.” PUVA patients take the pills — probably the same version you’re taking — and then use specially tuned “light boxes” or “booths” to get very measured doses of ultraviolet-A light waves. I tried PUVA in the early 1990s and might have been able to discover if it did or did not affect my vitiligo; however, just a couple of minutes in the light booth burned my skin and my supervising dermatologist decided I was NOT a good candidate for PUVA (or any other kind of light therapy).

Best of luck to you, Sermin! At least you’re not trying to tackle your vitiligo with sunshine north of the Arctic Circle. Right?  -Ed

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