This content is sponsored by
This content was produced by Boston Globe Media's
in collaboration with the advertiser. The news and editorial departments of The Boston Globe had no role in
its production or display.
MOST POPULAR ON BOSTONGLOBE.COM
Based on what you've read recently, you might be interested in these stories
By Jamie Burke
Valarie Molyneaux and Barbara Hamilton lead an international support group for people who, like them, have vitiligo. In talking with Dr. Yuji Yamaguchi, they meet a scientist who shares their mission of bringing hope to people with the condition.
Facing “no cure” and finding hope
Valarie Molyneux first noticed the white spots on her fingers — first one, and then another. She washed her hands, rubbed her skin, and began to worry when the spots wouldn’t go away. She didn’t know what it was until a fellow teacher at Molyneaux’s school suggested she visit a student in a nearby classroom, who had similar patches on her hands and arms.
Molyneaux sat beside the girl and asked her what had happened to her skin. “I learned a word I’d never heard before,” says Molyneaux. It was vitiligo, a chronic dermatological condition in which the skin loses pigment, causing white patches to appear. While vitiligo can be debilitating for people with darker skin, Molyneaux says she’s faced misconceptions that the condition only affects Black people like her. People of any race can have vitiligo, and any area of the body can be affected. Often, vitiligo on prominent areas like the hands and face causes patients the most distress.
The kindergartener told Molyneaux that, because of the way her skin looked, the other children didn’t want to play together.
“I said, ‘Well I’m here, and I’m your friend,’” says Molyneaux.
While the initial shock of her diagnosis was difficult, Molyneaux says the worst part was hearing the words from her dermatologist: No cure. “I thought my world had ended,” she says. She fell into a deep depression, feeling lost and confused by her condition. How did it happen? What would her skin eventually look like? The questions swirled around her mind. As her vitiligo lesions spread, people sometimes reacted negatively to her appearance, even treating her as if she were contagious. It made Molyneaux want to hide her face, her hands, her whole self from everyone.
“I went to work, and I went to church because there was some people that could rally around me,” says Molyneaux. “And that was the extent of me leaving my house.”
For about two years, she lived in her grief. During that time, in the back of her mind, she always knew she wasn’t the only person living with this condition. But how could she find them?
One day, on Facebook, she typed in the word vitiligo. Soon, she found people who could relate — and she learned about a Vitiligo Support International conference that was happening in Williamsburg, Virginia. Molyneaux attended with friends whom she’d met through Facebook. While there, she inquired about starting an affiliate group for the Northeast. When she was denied, she felt that same depression come back.
“But those friends I met, they said to me: You do what you’re going to do, and we’ll be with you,” Molyneaux says.
From a friendship to VITFriends
Out of that moment, grew VITFriends, an international vitiligo support group headed up by Molyneaux. Through it all, Barbara Hamilton has been there.
Hamilton and Molyneaux have been friends and neighbors in Hyde Park for over 30 years. When she first met Hamilton, Molyneaux says, it felt like she had gained a sister. Their shared condition has only made their bond stronger. Like Molyneaux, Hamilton is a Black woman with vitiligo. Her diagnosis came when she was 25.
“It does run in my family,” Hamilton says. Genetics is one possible explanation for vitiligo. Hamilton knows her great-grandfather, who lived in Bermuda, was afflicted. Her mother, too, had a vitiligo lesion on her hand that never spread. Barbara, however, is now 85 percent depigmented, with melanin remaining mostly on her lower legs.
The transition stages were the hardest part. Both she and Molyneaux tried topical and phototherapy treatments, which were unsuccessful and time-consuming. For a time, Hamilton attempted to cover her skin with darker makeup. “When I finally got to the point that my face was fully depigmented I felt better,” she says. “I didn’t have to answer those questions. I didn’t have to succumb to a lot of the stares.”
Today, she’s accepted her condition — “it feels like freedom,” she says. But she’s working to help ensure others, including her granddaughters, won’t face the same issues. Hamilton attended one of the first VITFriends meetings in Hyde Park. Today, VITFriends has more than 15 affiliate groups across the United States, and one in Cuba called VITAMIGOS. Molyneux is the president, and Hamilton is the treasurer.
“[Valarie] has got a good vision. She’ll say ‘I want to talk about this, let’s think about doing this,” Hamilton says.
At their Hyde Park location, VITFriends shares information, resources, and support for vitiligo patients and their loved ones. Each year, they organize a conference that’s attended by hundreds of people with vitiligo, as well as scientists, researchers, and fellow activists. Molyneaux, Hamilton, and others have organized for better recognition of vitiligo at the NIH, and for legislation to improve vitiligo research. VITFriends has a podcast series, and they’re working on a documentary. And they want to keep growing.
“It’s all part of the mission, part of the vision, to just bring as many people as possible to expose people to a better life,” Hamilton says.
Meeting Dr. Yamaguchi, a “member of the team”
One of the people that VITFriends has reached is Dr. Yuji Yamguchi — he’s seen Molyneaux speak at a World Vitiligo Day event. Like Molyneaux and Hamilton, he’s dedicated to helping people with vitiligo. Yamaguchi is an Immunology and Inflammation scientist at Pfizer who has researched the condition.
Yamaguchi began his dermatology career in Japan where he saw patients with the disease. Many, he found, suffered greatly. The treatments he could provide — topical medications, immunosuppressants, phototherapy, surgery — weren’t efficacious. Even when a patient was satisfied with the results, Yamaguchi felt disappointed that he couldn’t do more. That’s what inspired him to go into research, in the hopes of discovering better options or even a cure.
“There was very, very slow evolution in terms of treatment modalities for vitiligo,” Yamaguchi says. But recently, developments for topical and oral treatments that target autoimmune responses and melanocyte-producing cells — the cells that “hold on” to skin’s hue — have proven hopeful. He notes that up to 20 percent of vitiligo patients also have an autoimmune disease or thyroid issues. The autoimmune pathway, along with genetics and cellular oxidative stress, including injury, are part of the “trifecta” of better understanding vitiligo. Not only could these investigational treatments potentially help prevent melanocyte-producing cells from losing color, but they may help promote repigmentation, says Yamaguchi.
Now, Yamaguchi has the chance to meet Molyneux and Hamilton face-to-face — or at least on a Zoom call between his office at Pfizer and Molyneaux’s home, where Hamilton is, too. As he finishes reading the letter they’ve written, he, like Molyneaux, goes back to that little girl in the kindergarten classroom.
“That was a very touching and sad statement,” he says. “I think we need to strongly mention that vitiligo is not a contagious disease. It’s maybe one of the most important things we [need] to share.”
Molyneaux and Hamilton agree. “It’s our job, it’s our hope, that one day this word ‘vitiligo’ would be, so to speak, a household word,” Molyneaux says.
Yamaguchi shares Hamilton’s hope that younger generations won’t have to suffer the effects of vitiligo, and agrees with Molyneaux that mental health help is an important aspect of treatment.
As their conversation continues, it becomes clear that they are three people who share the same mission, and whose work is important to helping people with vitiligo.
“It’s a team effort,” Hamilton says, of the partnerships between advocates like herself and researchers like Yamaguchi.
“There were no vitiligo support groups when I was practicing in Japan, so I wish we could have an organization like VITFriends,” Yamaguchi says. He gestures toward his tie — it’s purple, the VITFriends color. “So that’s why I wear the purple tie today,” Yamaguchi says.
“Share our information!” says Molyneaux. She was once someone who hid at home. Now, through VITFriends, she and Hamilton have reached hundreds of people, all over the world. “We’re ready,” she says.
Sponsored by Pfizer
Valarie & Barbara’s letter: “Vitiligo is debilitating, devastating, and many more adjectives, but I wanted to live fully…“