Fourteen-year-old Maya Johnson may speak softly, but her message is loud and clear: she embraces who she is, vitiligo and all.
Maya is among the 1% of the global population affected by vitiligo, an autoimmune condition that causes the skin to lose its pigment. Diagnosed at age five, Maya has grown up with the condition and now considers it part of her identity.
Though her skin often draws attention from strangers, Maya has learned to turn that curiosity into confidence. “When people see me, they… touch their neck. Because that is what they see,” she said, referring to the visible patches on her skin.
Rather than shy away from the spotlight, Maya has stepped into it — modeling in photo shoots, walking fashion runways, and even catching the attention of her role model, supermodel Winnie Harlow, who also has vitiligo.
Maya’s self-acceptance has inspired more than admiration. Her story is at the heart of a growing Vitiligo Awareness event in the Cleveland area, first launched by her grandmother, Sonja Johnson, seven years ago.
“Some of the ladies cried when they saw how confident she is,” said Sonja. “They wish they could feel that way about themselves. But that’s all God.”
Held every June — which is Vitiligo Awareness Month — the event has grown from a small awareness walk into a large community gathering at Euclid Creek Park. This year’s event will take place on June 20.
The goal remains the same: to raise awareness about vitiligo and provide support for those living with the condition. “It can affect any age, any race, any gender, any nationality. It doesn’t matter,” Sonja said.
According to the Cleveland Clinic, vitiligo may increase a person’s risk for other autoimmune diseases, such as diabetes, lupus, and thyroid disorders. While there are treatments available to manage the symptoms, there is currently no cure.
Still, Maya’s presence and positivity continue to uplift others. Her family hopes her journey will serve as a beacon for anyone struggling with their appearance.
“She’s an inspiration,” Sonja said. “And he’s just getting started.”
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