Health
Pale by Comparison
Dallas County commissioner John Wiley Price is one of many Texans who have a skin disorder known as Michael Jackson’s disease. They can treat it, but they can’t beat it.
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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?”
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