July 3, 2001
New Approach to a Discoloring Skin Disorder
By JANE E. BRODY
Loretta C., who has a skin condition called vitiligo that literally turned her skin from black to white, was brought up to cherish her African-American heritage. So the disparagement that she and her husband and children have suffered from fellow blacks has been especially painful.
About 1 percent to 2 percent of Americans have vitiligo. While the condition is not contagious, painful, itchy or dangerous, the disfigurement it can cause‚ especially for dark-skinned people‚ can be profoundly damaging socially, professionally and psychologically.
“I’ve experienced racism both as a black and as a white woman,” Loretta reports on the American Vitiligo Research Foundation’s Web site, www.avrf.org. “People think my husband married a white woman. I feel isolated from my ethnic group.”
As her skin gradually lost its color, patch by patch, people treated her like a leper. Thinking she had a contagious disease, they often refused to shake her hand or take money directly from her.
In India, vitiligo (pronounced vit-uh-LIE- go) is often referred to as “white leprosy,” and women with it are often discriminated against in marriage; if they develop vitiligo after marriage, it can be grounds for divorce. Nehru ranked vitiligo as the third-biggest health problem in India, after malaria and starvation.
Vitiligo is less obvious in light-skinned people, though it can still be traumatic and result in ostracism or teasing.
In the Children’s Corner on the foundation’s Web site, April Mitchell, a teenager who has had vitiligo since she was 8, reports that she has been called all sorts of names, including “cow,” “dog” and “chocolate and vanilla,” and has been asked if she had rolled in the mud. She has made cards to hand to the curious, in which she states that she is not contagious, adding, “I’m just like you; I just have two colors of skin.”
April states that she has learned from her experience with vitiligo that “I’m not the only one in the world that is different.”
A Neglected Disorder
Vitiligo results from the loss of melanocytes. These are the skin cells that produce melanin, the pigment that gives skin its color. Melanin is generated in response to the ultraviolet B radiation in sunlight; it is what makes light-skinned people tan. Additional melanin is produced after sun exposure in dark-skinned people as well, though it may be less obvious.
But in people with vitiligo, the melanocytes self-destruct, probably because of a toxic exposure or an autoimmune reaction in which the body mistakenly attacks its own cells. The resulting white patches of skin may enlarge and increase in number for a while, and then the condition may stabilize, only to start up again later. Injury, illness, a bad sunburn and severe stress have been known to provoke the onset or progression of vitiligo.
There is no way to cure the condition or halt its spread. Save for some devoted dermatologists, neither the medical profession nor health insurers seem to take it seriously. Stella Pavlides of Clearwater, Fla., who created the vitiligo foundation, said, “Ninety percent of dermatologists say to patients, ‘It doesn’t kill you, just go home and don’t worry about it.’ ”
Research into the causes and treatment of vitiligo has been limited. Through a long series of treatments originally developed for psoriasis, lost pigment can be restored in many people, said Dr. Thomas B. Fitzpatrick, a dermatologist at the Massachusetts General Hospital in Boston who was a pioneer in treating vitiligo. If the condition is very widespread, bleaching the remaining skin to match is an option, he said.
Vitiligo is not present at birth; it shows up between the ages of 10 and 30 in about half the people who get it. More than 30 percent of those affected are likely to have a family history of the disorder, although fewer than 10 percent of the children of people with vitiligo develop it themselves. It is sometimes associated with more serious disorders that may also have an autoimmune cause.
For example, up to 30 percent of women with vitiligo develop thyroid disease. Vitiligo patients also have an increased risk of developing diabetes, pernicious anemia and Addison’s disease, an adrenal disorder.
People with vitiligo must protect their skin from exposure to the sun. Affected areas of skin can become seriously sunburned while the surrounding skin tans.
Affected people must be vigilant about using sunscreen with a high sun protection factor (30 or better) on exposed skin year- round. During long periods outdoors, they should wear long sleeves, pants and wide- brimmed hats.