For Vitiligo Patients, New Treatments Offer Hope06/24/2019
Stella Pavlides has vitiligo. It’s an autoimmune condition in which the body attacks the cells, called melanocytes, that give skin its color. She was 22 years old and studying to be a court reporter when she first developed unsightly white patches on her hands and feet, then around her mouth, eyes, arms, legs and groin.
“People say vitiligo doesn’t kill you, but it kills your spirit,” she told me. “Kids get stared at, spit on, beaten up.” Although the condition is most obvious and often most emotionally and socially devastating when it afflicts dark-skinned people, Ms. Pavlides said her disorder was painfully apparent on her light tawny Greek skin.
“I wouldn’t go out with my friends,” she told me. “I never went to the beach. I became a recluse. I even contemplated suicide. When I did go out in the summer in New York City, I wore long-sleeved tops, long pants and socks.”
When she wasn’t covered head to toe, she said, “People would stare at me and whisper to one another. They wouldn’t put money in my hands because they were afraid to touch me. I dropped out of school. How could I be a court reporter with vitiligo all over my hands?”
Today Ms. Pavlides, now 73 and living in Clearwater, Fla., is a different person. She still has vitiligo, but she no longer wears long sleeves and long pants and walks around in sandals. She does, however, always wear sunscreen. Should her normal skin get tan, it would make the depigmented areas more obvious, and the sun would easily burn the white patches.
Ms. Pavlides’s life was turned around at age 55 by a 9-year-old girl with vitiligo who told her: “God made you and God doesn’t make mistakes,” suggesting she rise above the reaction of others and stop covering herself top to bottom. Now, as founder and head of the American Vitiligo Research Foundation, Ms. Pavlides is a role model for the young people who come to the organization’s summer retreat.
I first wrote about vitiligo 18 years ago. It is still incurable, but significant progress has been made in treating it and recognizing and reducing the tremendous emotional toll it can take, especially in children and adolescents, who represent half of the approximately 1 percent of the affected population.
“We now have a much better understanding of the immunological pathways involved in vitiligo, which is providing insight on how to target and treat the disease better,” said Dr. Seth J. Orlow, chairman of dermatology at New York University School of Medicine. “Although most of the latest treatment studies have involved only a small number of patients, there have been some very promising results,” he said in an interview.
Most promising have been two drugs already on the market for other conditions, tofacitinib and ruxolitinib, used in combination with one of the oldest vitiligo treatments: targeted exposure to a narrow band of ultraviolet B light, the rays that cause tanning and sunburn. The drugs, called JAK inhibitors, block the body’s misdirected immunological attack on melanocytes, and the UVB light stimulates residual pigment cells to restore color to the bleached patches of skin, Dr. Orlow explained.
The approach is especially effective if people are treated before all the melanocytes in the affected areas of skin are destroyed. “If 10 percent of the cells remain, they can be induced to creep in and repopulate the depigmented area,” Dr. Orlow said.
Another therapy that relies on medication used for other conditions is topical application of prostaglandin E2, a glaucoma therapy, on localized areas of vitiligo. In two studies, six months of this treatment produced moderate to complete repigmentation in a majority of patients, Dr. Orlow and colleagues reported in F1000 Research.
And in a study that used the topical glaucoma treatment latanoprost in combination with narrow-band UVB, greater repigmentation occurred than with either substance used alone.
Like most autoimmune conditions, vitiligo is an acquired disorder. Rarely are children born affected, though they may be genetically susceptible to developing an autoimmune disorder. People with vitiligo, including Ms. Pavlides’s 51-year-old son, often have other autoimmune disorders like thyroid disease, rheumatoid arthritis, diabetes or alopecia areata. In some families, premature graying of the hair results from an autoimmune loss of melanocytes in the hair follicles.
“There are families in which people are prone to autoimmune conditions, but each member gets a different one, and there are other families in which multiple people have vitiligo, perhaps because of something different about their pigment cells,” Dr. Orlow said.
Vitiligo can first show up in early childhood or as late in life as one’s 80s. It involves no microorganism and is not contagious, even though in some countries vitiligo patients are treated as if they had leprosy. The disorder typically starts as small irregular white patches on the skin that gradually enlarge and change shape. Its expression is often provoked by a physical, physiological or emotional stress, like a sunburn, certain chemical exposures, a car accident or a divorce. However, most of the time the triggering event is unknown.
A common underlying mechanism is oxidative stress, an inability of the body to neutralize damaging molecules like free radicals with antioxidants. This may explain the case of a man whose vitiligo regressed when he was taking a high dose of a statin to treat high cholesterol. Statins have, among their effects, the ability to scavenge free radicals.
If medication is not effective, another option involves taking healthy skin cells, for example, from the buttocks, and grafting them to the depigmented areas. And if vitiligo is especially severe and too extensive to treat directly, there remains the government-approved option of total depigmentation therapy, using monobenzone to bleach the unaffected skin, an approach Michael Jackson was said to have used to make his vitiligo less obvious.
But treatment of the vitiligo alone may be insufficient to limit the psychological toll vitiligo can exact. Dr. Brett King, associate professor of dermatology at Yale University School of Medicine, who conducted a successful study of tofacitinib and UVB light therapy, said that “vitiligo affects the way the world interacts with you. It can be frustrating and embarrassing, and for some, it leads to clinical depression and anxiety.” In two cases known to the American Vitiligo Research Foundation, people with the condition committed suicide.
Experts urge that, when needed, patients should be referred to therapists for psychological support, which might have lessened the emotional distress Ms. Pavlides experienced for so many years.
Jane Brody is the Personal Health columnist, a position she has held since 1976. She has written more than a dozen books including the best sellers “Jane Brody’s Nutrition Book” and “Jane Brody’s Good Food Book.”
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