Winnie Harlow Wants to Demystify Vitiligo: ‘Something I Wish I Had Growing Up’ (Exclusive)

Winnie Harlow always felt different growing up. “When I was a kid, I felt like I was the only person in the world with vitiligo,” she tells PEOPLE of her autoimmune condition that causes loss of skin color in patches.

On Dec. 2, the model shared that she has since learned to love living in her skin. Partnering with biopharmaceutical company Incyte, Harlow tells PEOPLE she hopes to demystify vitiligo by making information about the condition readily available to everyone.

Harlow was diagnosed with vitiligo at age 4, and one of the hardest things about growing up with it was the lack of information about the condition, she says. Without much research available at the time, living with vitiligo often made Harlow feel she didn’t have any choice in how she could navigate it, a theme she discusses in the two partnership videos with Incyte.

“The ability to share knowledge is really powerful for me,” Harlow says, adding that now there are “options and choices” for those living with the condition.

Vitiligo is an autoimmune disorder that targets pigment in skin, resulting in pale or white patches. What many people don’t know, Harlow says, is that vitiligo can affect people of every race and skin tone, that those with vitiligo are also more susceptible to other autoimmune disorders, and that the disease isn’t purely cosmetic and should be monitored by a dermatologist.

Harlow attributes her self-love to her Jamaican heritage and her family, particularly her mother and grandmother. Because her family taught her confidence early on, Harlow was equipped to handle unkind comments from bullies — and in rough moments, she had a safe space in her family.

“Regardless of having vitiligo, kids deal with bullying all the time,” she says. “And so being able to have those safe places, be it your friends, your family, and being able to be yourself is really pivotal to shaping a strong, confident child.”

Harlow hopes to help others feel comfortable and love themselves by publicly doing the same, she tells PEOPLE. It’s part of the reason she forged her career in modeling: to be the representation she didn’t get to see as a child.

“I really love that through my career I’ve been able to just be myself, and through being myself, it allows other people to feel comfortable being themselves,” she says.

“When it came to modeling, I feel like every opportunity that I was able to accomplish felt so much more powerful because it was trailblazing. It was a door that hadn’t been opened before, and so it made everything feel so much more rewarding,” she continues, adding, “To be able to be that person for others is a gift, because I didn’t have that, growing up.”

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Looking to the future, Harlow hopes vitiligo becomes normalized and accepted to the point that it’s no longer the “headline” of a person’s story. She built her upcoming children’s book, Simply Winnie, on that concept, she says.

It was and continues to be “amazing” to see differences highlighted in children’s literature, Harlow says. But she wanted to take it one step further and “make difference the norm.”

“I wanted to create a world for kids where they could see things that were different and be aware of things that are different without it being the main storyline,” she says. “Because I think that is the next step in representation and inclusivity is not making things the token or the headline.”

This article was written independently by PEOPLE’s editorial team and meets our editorial standards. Incyte is a paid advertising partner with PEOPLE.