Supermodel Winnie Harlow made history earlier this year as the first model with vitiligo to walk the Victoria's Secret Fashion Show. Her rise to fame—not to mention her five million Instagram followers—now has people talking about the commonly misunderstood skin condition.
Vitiligo, a disorder that causes skin to lose its pigment, affects about one percent of people worldwide. It happens when pigment-producing skin cells die, according to the American Academy of Dermatology. Some people lose pigment in just a few patches, while others have scattered patches all over their bodies. Rarely do people with vitiligo lose all pigment from their skin.
Vitiligo is not contagious and doesn’t cause health problems, although a few people report that the affected skin feels itchy, according to the American Academy of Dermatology. We asked a handful of experts to answer a few of the most common questions people have about the condition.
Why do some people develop vitiligo?
The causes of vitiligo aren’t fully understood, but research suggests that it’s an autoimmune disorder. “It’s a dysfunctional interaction between one’s melanocytes, which are the pigment-making cells in the skin, and one’s immune system,” says Brett King, an associate professor of dermatology at Yale. “Something happens that makes the immune cells attack and destroy the melanocytes, and that leads to white spots in the skin.” Although vitiligo can start at any age, it typically begins between ages 10 and 30, according to the American Vitiligo Research Foundation.
Research suggests a link between vitiligo and other autoimmune disorders. One recent study showed that 20 percent of vitiligo patients had another autoimmune disease. Thyroid diseases were most common, followed by alopecia areata, inflammatory bowel disease, pernicious anemia, systemic lupus erythematosus, Guillain-Barre syndrome, discoid lupus, linear morphea, myasthenia gravis, and Sjogren syndrome.
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Julie E. Russak, a New York City-based dermatologist and assistant clinical professor at Mt. Sinai School of Medicine, asks patients with vitiligo about their genetic history and whether they have a family history of vitiligo or autoimmune thyroid problems such as Hashimoto’s thyroiditis. They often see success when treating both problems at the same time. It’s also important to figure out why some patients have unnecessary inflammation. “Internal inflammation could cause our bodies to ‘order’ antibodies against our own cells, which is why it's vital to discover the patient’s inflammatory health to then change it,” Russak says.
How is vitiligo treated?
The only FDA-approved treatment for vitiligo is a topical treatment that takes pigment away from the skin that still has it, essentially evening out the patient’s skin tone to the color of the light patches. (This is how Michael Jackson is believed to have treated his vitiligo.)
This approach, however, is not appealing to many patients. “[They] do not want to lose their own pigment,” Russak says. “They want to create pigment in the areas where [it's] been lost.” Some anti-inflammatory creams can help restore pigment to lightened patches, and these are effective about 45 percent of the time. Laser or other light treatments may also help restore skin pigment in up to 70 percent of patients. Most people, however, lose pigment again within four years.
The good news is that treatments for vitiligo are expected to improve in the near future. Emerging research suggests that prescription treatments for other autoimmune disorders might also help some people with vitiligo. In 2015, King demonstrated that Tofacitinib, the rheumatoid arthritis drug known as Xeljanz, restored lost pigment in a woman with vitiligo. This medication inhibits Janus kinase 1 and 3, two known inflammatory substances that have been implicated in some autoimmune disorders. “This class of medicines offers a totally unique opportunity to make vitiligo better,” King says. “The next five to ten years of vitiligo treatment, I suspect, will be built upon this class of medicines.”
In addition to prescription treatments, sunscreen is also an important product for people with vitiligo. “The most important thing to understand about vitiligo is that there are no pigment cells in the areas with vitiligo which means there is no protection there against UV radiation,” Russak says. “Patients must then wear sunscreen with zinc and reapply as needed.”
How else does vitiligo affect people?
While Harlow and Amy Deanna, the first Cover Girl model with vitiligo, are breaking boundaries, the stigma associated with vitiligo can be troubling for many people. (Earlier this year, Harlow corrected a newspaper that had labelled her a vitiligo “sufferer” by pointing out that she is, rather, a model who happens to have vitiligo.)
Vitiligo can exact an emotional toll on some patients, King says, adding that some people with vitiligo report that people stare at them or are afraid to touch them because they (wrongly) think vitiligo is an infection or something contagious. Therapy and support groups might help, research suggests.
Fortunately, as researchers learn more about vitiligo, there’s more hope than ever for awareness and effective treatments. “We’re learning more and more about the disease, which means that we can design specific tools to treat it,” King says.
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