Valarie Molyneaux is used to puzzled looks when she says she was born Black. Her arms and much of her face, after all, are ivory white. The transformation started about 20 years ago with a single white spot on her left thumb.
The dime-sized spot, was followed by another, and then another. The retired kindergarten teacher, once dark skinned, was literally turning white. She describes how desolate she felt when a doctor first told her she had vitiligo, a chronic immune disorder, and that there was no cure for the rapidly spreading white patches that were taking over her dark skin.
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“I was on my church board, attended neighborhood meetings, and I dropped so many things and so many friends because I was so depressed,” Molyneaux said.
Today, there’s new hope for the estimated 3 million Americans with vitiligo, thanks in no small part to research at the University of Massachusetts Medical School in Worcester, a hub for vitiligo research and treatment.
But for people such as Molyneaux, 65, new treatments may be too late. She’s already made peace with her altered appearance, even creating a Hyde Park support group, VITFriends, to celebrate and support people with vitiligo.
“I have come too far, and I love me just as I am. But I will stand and fight for treatment for the younger generation,” said Molyneaux, who no longer uses steroid cream and ultraviolet light — standard vitiligo treatments that can bring color back to the white patches. They didn’t, however, work for her.
The emerging treatments, including a cream to repigment skin that is awaiting federal approval, are exposing a divide among people with the surprisingly common condition best known for afflicting Michael Jackson: While many with the condition are eagerly seeking a cure, others are not so certain. And some younger people are also very “out” and proud about their vitiligo — including Canadian model Winnie Harlow.
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“I AM NOT SUFFERING!” wrote Harlow on her Instagram account in 2018 after a British newspaper described her as a “vitiligo sufferer.” “If anything I’m SUCCEEDING at showing people that their differences don’t make them WHO they are!”
Then there are people like Madison Burnsed of Norwood, an 11-year-old who endured blisters from light treatments three times a week in hopes of reversing the effects of vitiligo. She sees the disease as something that makes her “special,” but her mother says she’s still eager to try new treatments.
“As long as the medicine doesn’t irritate anything, then I am good,” Madison said.
Medical experts estimate that about 1 percent of the population has vitiligo, which causes a person’s immune system to mistakenly attack the cells that produce pigment, known as melanin, leading to patches of white skin that usually spread over time. Vitiligo is not contagious or life-threatening.
The disease can occur in people of any age, gender, ethnicity, or race, but it is more readily apparent in darker-skinned people, causing considerable embarrassment to some. The late Michael Jackson went to great lengths to hide his mottled skin before resorting to medication that lightened it.
“With vitiligo, people have been told there are no treatments for so long that they come to accept it,” said Dr. John Harris, director of the Vitiligo Clinic and Research Center at the medical school and UMass Memorial Medical Center.
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Harris is the senior author of a study last year that found that participants using a cream, known as Ruxolitinib, had significantly more improvement in repigmenting their white patches after six months compared to a control group that was given a placebo cream.
In May, Incyte, the Delaware biopharmaceutical firm funding the Ruxolitinib trials, announced similar results from a larger Phase 3 study, and the company said it intends to seek approval of the medication for patients 12 and older from the US Food and Drug Administration. If approved, it would be the first vitiligo medication for repigmenting skin to receive the blessing of federal regulators.
Aliya Sawyer underwent more conventional treatment, enduring ultraviolet light therapy sessions three times a week for several months when she was 5, but the vitiligo progressed faster than the treatments. By first-grade, large patches of white covered her formerly caramel-colored skin and she gave up on the treatments.
“I went to the bathroom and a girl said, ‘Oh, did you bleach your skin or something?” said Sawyer, now 11.
“I said no. I was so young at the time it was hard to explain it. Then she started to call me names like a cow, and I started crying” Sawyer said. The Dracut resident is now 90 percent white and is an active and outspoken advocate for youngsters with the disease.
Madison Burnsed also reached a detente with her disease. The former Florida resident, whose family moved to Norwood during the pandemic, matter-of-factly explained to a new set of friends the white patches on her shins, arms, neck, and back.
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“I just say that’s what makes me unique because everyone has their own thing that makes them special,” she said.
Madison is naturally fair-skinned, and her patches become more noticeable only when she plays outside and the rest of her skin tans.
“Right now, Madison has a positive attitude,” said Madison’s mother, Martine Burnsed. “But when she gets older, I know kids can be mean, and I hope she stays in that mindset.”
For Jamie Villanueva, a 46-year-old Medford resident, vitiligo didn’t strike until five years ago, but he, too, worries about his two children, ages 7 and 9, facing bullying if they develop the disease when they are still young.
Villanueva gave up on light treatments because of the time and expense involved, paying to travel and park in Boston several times a week for the appointments. His insurance, he said, wouldn’t cover at-home light treatments.
“The condition doesn’t bother me, I just wear make up on my face,” said Villanueva, a Filipino whose dark skin has significant white patches on his face, hands, groin, and feet.
The basic problem with current vitiligo treatments is that when halted, up to 40 percent of patients relapse within the first year.
But now researchers are finding new approaches that could be longer lasting. Harris, the UMass researcher, has started a company, with $18 million backing from a life sciences venture capital firm, to develop a medicine that might get rid of the autoimmune cells that carry vitiligo, instead of just putting them to sleep.
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They’ve developed an antibody, and tests in mice indicated just a few months treatment might block vitiligo for years, Harris said.
“If it works, instead of it coming back in a year of stopping treatment, it may come back 5 or 10 years later,” Harris said, who hopes to begin trials in people in about two years.
A UMass colleague, Dr. Bassel H. Mahmoud, an associate dermatology professor, is working on another approach, refining a surgical procedure to transplant pigment cells from a patient’s unaffected skin to white patches that have been resistant to other vitiligo treatments. If successful, it will allow doctors to remove smaller pieces of healthy skin and treat larger patches, resulting in fewer repeat visits for patients, Mahmoud said.
But the surgery can cost several thousand dollars per treatment and is typically not covered by insurance. Few places perform the surgery, so Mahmoud often treats people from around the world.
“I have treated patients who say people are afraid of shaking their hand,” he said. The disease has had a “huge impact on the quality of their life.”
Others have turned to alternate treatments, particularly supplements, with little scientific support, said specialists speaking at a June conference by the Global Vitiligo Foundation and My Vitiligo Team.
“Unfortunately, we don’t have any well-controlled studies that really allow us to . . . give evidence-based recommendations about diet and vitiligo,” said Dr. Nada Elbuluk, director of the Skin of Color Center and Pigmentary Disorders Clinic at the University of Southern California.
Vitiligo specialists speaking at the conference said too many patients are told by ill-informed physicians that nothing can be done for their vitiligo, when even existing treatments can be quite effective for many patients. They also noted a plethora of clinical trials seeking volunteers to advance vitiligo treatments.
“It really is an exciting time for patients with vitiligo, when we have multiple new drugs in development,” said Dr. Pearl Grimes, director of the Vitiligo and Pigmentation Institute of Southern California. “But when used appropriately, we can make significant strides with the current tools already in the tool box.”
Kay Lazar can be reached at kay.lazar@globe.com Follow her on Twitter @GlobeKayLazar.