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 not only in discreet regions of Carter’s body but also at the corners of her mouth and eyes, on her neck, and on the backs of her hands. Luckily, by 1994 PUVA treatments had been refined at certain dermatological clinics to the point that 70 percent of pigmentation could be restored. One of those clinics was at Southwestern Medical Center, where assistant professor of dermatology Amit Pandya had turned PUVA treatment into an art. Carter visited Pandya and was given two options. She could repigment the portions of her body that had lost pigment cells. Or she could choose to depigment—to allow the disease to run its full course—and live with the consequences: She might have a pigmentless, milky complexion for the rest of her life; or if the disease stopped at, say, 50 percent depigmentation, her skin might be a permanent mix of white and fleshtone.
Even though many vitiligo sufferers (including, apparently, Michael Jackson) opt for simply living with the disease, Carter chose repigmentation treatment. The disease had spread to her face and neck: She felt she had no choice. Three times a week, Carter faithfully submitted to her course of treatment: She would visit Pandya’s clinic, disrobe, stand in a small cubicle, and “tan” her splotchy body under a special UVA light—which is gentler than the sun’s UVB light—for up to five minutes. Improvement was excruciatingly slow, but within months she could see that the milky white blotches on her neck and forearms were turning pink, then flesh tone. On two occasions, however, her skin got an overdose of the ultraviolet light, and she wound up with the most nettlesome, painful sunburn of her life. “It was like the tissue beneath the actual skin was burned,” she says. “It would tingle and burn and itch. It was awful. It went on for weeks.”
Pain aside, Pandya says those PUVA treatments are the most effective antidote for vitiligo (though minor cases can be treated with steroids, and advanced cases may require skin grafts). The procedure was developed at Harvard University in the seventies as a way to combat psoriasis, though the use of the Ammi majus plant (from which psoralen is derived) as a skin therapy dates back to ancient Egyptian times. Scientists found that dosages of psoralen combined with brief exposures to ultraviolet light could literally repigment skin stripped of pigment by vitiligo. The key to making the therapy successful, Pandya says, was correctly calibrating the amount of exposure to the UVA light and, more important, tempering patients’ expectations. Even the gentler UVA light, if imprudently administered, can promote certain benign and malignant skin tumors in tender, recently repigmented skin. “We make an effort to let patients know that this will be a long, slow process,” Pandya says. “It may be a month before they even see the skin turn pinkish. At that, it probably won’t be one hundred percent successful, and it requires constant maintenance.”
That’s because dermatologists like Pandya are still largely at a loss when it comes to combating the cause of vitiligo, even if they’re better at dealing with the symptoms. The disease seems to operate like the ordinary sinus allergy, in which the immune system misreads even innocuous matter entering the respiratory system as dangerous and foreign and begins producing histamine to purge it from the body. In much the same way, immune cells in the skin of vitiligo sufferers seem to misread normal pigment cells and destroy them with dispatch. “It’s like a glitch in the immune system,” Pandya says.
Vitiligo is also one of a burgeoning number of diseases in which the “collateral psychological overlay” of the ailment is as bad as, if not worse than, the disease itself. Pandya says that most of the forty or so vitiligo patients he and his associates see at the Southwestern outpatient clinic suffer from some degree of emotional trauma related to the condition. Take the teenager who came to him suffering not only from vitiligo but from severe social underdevelopment—extreme shyness and lack of self-esteem—as a consequence of the disease. After a year’s worth of PUVA treatments and the resulting repigmentation, the patient has blossomed socially. “It’s not nearly as bad here as in India,” says Pandya, who was born in Bombay. “There, people with vitiligo are treated so badly that skin grafting is one of the leading surgical procedures by dermatologists in that country. But still, here in the States, the way vitiligo makes you look can create extraordinary pressure.”
Indeed, it was the psychological overlay caused by vitiligo that prompted Allen Locklin to try to help sufferers like himself back in 1985. Medical science had by then begun to refine the PUVA treatment, but Locklin sensed that that wasn’t enough. He had lived with the disease since he was a teenager—through the dark days, when all doctors could prescribe was makeup, then through the uncertain early days of PUVA treatment, before it became the exacting process it is today. “I know the way I felt before I made a commitment to go forward with the treatments,” he says. “I felt like there was a lot of misinformation out there about vitiligo, and people needed someplace they could find out the facts about it.”
Learning that no such private organization for vitiligo sufferers existed anywhere in the nation, Locklin did what Texas oilmen often do in such cases: He and his wife, Nancy, co-founded the National Vitiligo Foundation, headquartered in Tyler. A decade later, the foundation has fielded some 40,000 contacts from vitiligo sufferers; it also sends out a semiannual newsletter on the disease to some three thousand doctors and patients and provides help to vitiligo support groups. The Locklins have poured about $80,000 of their own money into the cause and, through other fundraising efforts, have helped to bankroll about $600,000 in new research on the disease.
John Wiley Price has his own antidote for the emotional upheaval brought on by the disease—which, he notes, can be all the more severe for non-whites. “I just fight it back,” he says. “I must have set a record for time spent in that tanning booth.” Price visits Pandya’s clinic three times a week and spends thirty minutes each day under the light. So far it has paid off: About 95 percent of his pigment has been restored.
Price’s dedication is laudable, though many vitiligo patients find maintaining the therapy simply too time-consuming and expensive; a regimen like his can cost several thousand dollars a year. Locklin, for example, has ended his PUVA treatments after years of therapy and is playing tennis and golf in long sleeves and pants. He may return to them, however, because at present they’re the only thing he can count on. As with many autoimmune disorders, medical science continues its steady march toward discovering the glitch in the DNA that causes vitiligo and may one day treat the disease with gene therapy.
Susan Carter, for her part, has also stopped her PUVA treatments after two years of therapy and a 60 percent restoration of the pigment in the affected areas of her skin. “My progress seemed to have plateaued,” she says, “and I was just sick and tired of it.” But like other sufferers of Michael Jackson’s disease, she has accepted the unpleasant reality. “Come this summer, I’m sure I’ll resume,” she admits. “What choice do I have?”