Growing up, fashion model, actress, and public spokesperson Winnie Harlow lacked the resources to help her navigate life with vitiligo—a chronic autoimmune disorder that causes patches of skin to lose their pigment. She recalls searching for information online as a child, only to come up short.
Today, she is grateful for the platform that allows her to educate others about the condition and provide the options she never had.
“I just wanted people to understand that there is more information out there now than there ever was, and I wish I had that when I was growing up,” Harlow tells BlackDoctor.
She points to the myth that vitiligo, which affects 1.9 to 2.8 million people in the U.S., changes one’s race as a key reason why this education is so vital. “A person of Black heritage will always be Black, no matter if they have vitiligo, albinism, or any other skin condition,” she explains.
These persistent misconceptions are exactly what led her to partner with Incyte on their “The Power of Your Choice” campaign.
“I hope that people who experience a diagnosis of vitiligo know that they have options; they have information,” the 31-year-old says. Reflecting on her own upbringing, she adds, “When I was really young, my mom would take me to the dermatologist quite a bit, but as I got older, that aspect of healthcare kind of lacked for me. I felt like there was nothing that you could really do. I just strived to have confidence, and that was the most important thing for me.”
Harlow also highlights the importance of recognizing the systemic nature of the condition. “Making sure that you’re checking your thyroid or any other things that have to do with autoimmune disorders is really important, too,” she notes.
Though discussions about vitiligo often center on physical appearance, Harlow hopes young girls growing up with the condition will understand the importance of looking beyond the surface.
“I think as a woman of color in general, we have a lot to say about skin, but I think the main focus should be skin-deep and not what is on the surface,” she shares. “I feel like working hard at whatever you strive for—your career, your family, your passions—is key. Put your focus into the things that make you happy on the inside, because the outside is really not as important as we make it seem.”
Harlow’s passion for skin health also fuels her work as an entrepreneur. After a painful sunburn during a photoshoot, she realized the need for specialized protection for skin with varying levels of melanin, sparking the creation of her skincare line, Cay Skin.
“Obviously, with vitiligo, you have less protection from the sun because there is no melanin in those areas,” Harlow explains. “I wanted to make sure I created an SPF that works on all skin tones and speaks true to my own, because I have multiple skin tones. I wanted to make sure there was an SPF that not only worked on all skin tones but looked good on all of them.”
Harlow is also using her voice to reach the next generation through her book, Simply Winnie. The book is an ode to the stories she wishes she could have read as a child.
“A lot of the books I read about children with a difference were very ‘on-the-nose,’” she notes. “We forget kids experience so many other things—challenges in education, at home, or with self-esteem—outside of how they look. I want to create a world in my books where every kid has some type of difference, but it isn’t the main story. My story with vitiligo is secondary to the fact that I am a woman, a Black woman, and a model. I am so many other things besides having vitiligo.”
Last year, for World Vitiligo Day, Harlow made history when Madame Tussauds unveiled her wax figure. She is the first person with vitiligo to collaborate directly with Madame Tussauds. It was a milestone that allowed her to highlight how vitiligo evolves.
According to the Cleveland Clinic, vitiligo usually starts with a few small white macules or patches that may gradually spread over the body. The extent of affected skin varies among people diagnosed with vitiligo. Some people experience a few depigmented areas, while others have a widespread loss of skin color.
“When I spoke to them about how vitiligo changes, they were excited to have a process to recreate my wax figures over time,” she says. “Having a wax figure as someone with vitiligo was really important to me to showcase that it’s not something that stays the same; it’s always changing and evolving. I would love for those misconceptions to be cleared through the things that I do.”
As she continues her partnership with Incyte, Harlow remains focused on the human connection behind the diagnosis.
“I’m really excited to be able to talk to people with vitiligo and speak to kids with the condition,” she notes. “I never had someone to look up to—or someone who understood what I was going through—when I was younger. I love that Incyte creates these special moments where everyone feels seen.”
Ultimately, Harlow hopes her legacy will inspire others to embrace their true selves.
“I would love for not just little kids with vitiligo, but all kids who feel a little different or don’t feel like they fit in, to have a legacy that allows them to be themselves instead of trying to fit in,” Harlow concludes. “That’s the most important thing: being confident in who you are, because you’re beautiful just the way you are.”
Visit ThisIsVitiligo.com to access educational resources, find support, and learn more about your treatment options.
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