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In-depth: Living with vitiligo and what doctors advise if you notice early onset signs

Vitiligo affects about 1% of the world's population
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Posted at 5:34 AM, Jun 16, 2022
and last updated 2022-06-16 20:21:27-04

TAMPA, Fla. — Evalise Mendez was 16 when she first noticed a white spot behind her neck.

"It was alarming because I'm, you know, darker skin, so it was something very different and we went to the dermatologist and they confirmed at that time that I had vitiligo," said Mendez.

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Vitiligo is an autoimmune disease that attacks pigmentation causing people to lose their natural skin tone.

Dr. Seth Forman runs a dermatology practice in Tampa and is an expert in treating vitiligo. He said vitiligo could be reversible, but the chances of that happening are best with treatment within the first two years of onset.

"I have a lot of confidence that we can recapture the pigment both with topical medications as well as phototherapy," said Dr. Forman.

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Phototherapy is done in what looks like a tanning booth, but there are big differences in how they are used.

"So, this is the Narrow Band Ultraviolet B phototherapy unit. This provides phototherapy for vitiligo as well as some other skin conditions such as psoriasis or eczema, but for these purposes, patients with significant vitiligo get into the booth. We close the booth, and then we turn on the lights, and this light therapy is what goes to help re-pigment the skin by sort of scaring away the white blood cells that are attacking the pigmented cells in the top layer of the skin," said Dr. Forman.

Doctors still don't know exactly what causes this autoimmune disease. But they do know vitiligo is not life-threatening, isn't contagious, and affects about 1% of the world's population, regardless of race or gender, but it tends to be more prevalent among older people.

"We're very excited to have a proclamation recognizing vitiligo awareness month in the state of Florida," said Tonja Johnson, a vitiligo activist who started a vitiligo support group in 2018 called Beautifully Unblemished.

The group is based in Florida and has about 230 members.

"It was founded because there were no vitiligo support groups here in the state of Florida when I was diagnosed in 2014 with vitiligo," said Johnson.

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Tampa and Lakeland will light purple to celebrate world vitiligo day on June 25.