FIVE YEARS AGO Dallas County commissioner John Wiley Price got just about the worst news imaginable for a man who makes his living as a black activist: He was slowly but surely turning white.
Price had gone to his doctor after noticing that discolored blotches were spreading under his arms, in his groin, and around his ankles and wrists. He assumed they were a result of a temporary skin infection or perhaps a reaction to the sun, but they turned out to be something more serious: He had the symptoms of vitiligo, a common condition in which portions of the skin are progressively robbed of their pigment cells, leaving unsightly porcelain-white blotches all over the body. The condition is treatable but not curable, his doctor told him, and it might be fully progressive, meaning that at some point the man who recently called a Hispanic foe a “coconut” (brown on the outside, white on the inside) could be as fair skinned as any Hispanic—or any white, for that matter. “I thought I’d done everything right,” the 45-year-old says today with a slightly nervous laugh. “I thought, ‘God, please don’t do this to me.’”
The disease that afflicts Price and an estimated 1 to 2 percent of the world’s population has been around for centuries—long enough, at least, for the Hindus to have branded it a form of the dreaded leprosy and to regard its sufferers as social outcasts (it’s difficult for Hindu women with vitiligo to get married). Only recently has it permeated the public consciousness, however, thanks to pop star Michael Jackson. It had long been believed that Jackson’s milky skin tone was a cosmetic affectation, but in 1993 word leaked that he suffered from vitiligo, which was quickly rechristened “Michael Jackson’s disease” and became the stuff of jokes on late-night TV. (Indeed, it was Jackson’s vitiligo that furthered the Los Angeles Police Department’s suspicions that he had been a child molester; a thirteen-year-old accuser allegedly had identified distinctive skin markings on Jackson’s penis.)
Yet even with Jackson’s name—and, less publicly, the names of other celebrities, ranging from actor Dudley Moore to Palestinian Authority and Council chairman Yasir Arafat—attached to it, vitiligo remains something of a mystery. It is known that the disease can strike at any age, though half of those affected see symptoms before age twenty. It tends to erupt and then remit in cycles. Left untreated, it can render its victim a de facto albino and, if the depigmented skin is not properly protected from sunlight, increase the risk of skin cancer. It has a hereditary linkage: 30 percent of vitiligo cases are inherited. It is generally classified as an autoimmune disorder, meaning that something triggers the immune system to identify normal skin pigment cells as dangerous invaders and gobble them up, though it has also been associated with stress and can appear or spread more quickly in areas of the skin that have been traumatized by a scratch or a burn. But beyond those scattered notions, a firm grasp of the condition’s pathogenesis continues to escape dermatologists—even at the University of Texas Southwestern Medical Center in Dallas, where Price and many other Texans with the condition are treated.
About the only thing that is certain about vitiligo is that its sufferers endure a great deal. Not physically—it isn’t potentially fatal or even painful, and it isn’t disabling in any significant way—but mentally: The disease creates disfiguring skin splotches that can be severely embarrassing, especially in a culture that tends to associate beauty and even good health with suntanned skin. “When I realized I really had it bad, I felt that my life was over,” says 66-year-old Tyler oilman Allen Locklin, whose condition was diagnosed fifty years ago. “Everything I enjoyed was out of doors. The more tanned you get with this, the more it shows. I just became a recluse for two years.”
Actually, vitiligo tends to look worse than it really is. Though to a layman it can resemble leprosy or some form of jungle rot, it is not infectious and has nothing to do with poor hygiene. Its most insidious aspect may be its tendency to sneak up surreptitiously on its victim, first in areas of the body that he may not inspect carefully on a daily basis: under the arms and in the groin area; around ankles, wrists, and elbows; on the flanks of the midsection. “I couldn’t really even see how bad I looked until spring or summer, when I got a tan,” says 39-year-old Dallas public relations agency owner Susan Carter. “Even then, it was usually in areas that are covered by clothing.”
Carter’s first encounter with vitiligo was in 1984, when she noticed an odd whitish blotch on the inside of her thigh. It appeared so benign that she thought it must be a stain from sun screen. After a while, though, it didn’t go away, and her doctor told her she had vitiligo, a malady that sounded like some awful tropical virus. It wasn’t nearly as bad as all that, but in time she discovered that it was far from good. Dermatologists at Dallas’ Presbyterian Hospital told her the disease was of unknown origin and essentially incurable. Restoring the lost pigment would require taking the drug psoralen, which stirs repigmentation but has unpleasant side effects, including nausea and dizziness. She would then have to carefully tan the depigmented portions of her body for at least a year.
Despite the time and trouble involved, Carter gave the treatment a fair chance. But the side effects were as harsh as promised, and the so-called PUVA (psoralen ultraviolet A) treatment didn’t seem to work all that well, so after a year she quit. “I’d noticed the vitiligo had stopped spreading,” she says. “Since it was mostly in inconspicuous places, I decided I could live with it if it didn’t come back and get any worse.”
It took ten years, but it did come back, and it did get worse: It re-erupted