Vitiligo support group helps its members love being in their skin
Growing up in Plant City, Florida, Tonja Johnson was bullied for her dark complexion. Amid the constant glares and teases, she eventually grew to love the skin she was born in. In 2011, that changed. She started to lose the skin she grew to adore.
Over the next two years, both Johnson’s arms and legs began to lose pigmentation and pale patches began to take over her body. Her skin was progressively changing into a completely different color, causing her to look unrecognizable to even close family members.
She was 43 when she was diagnosed with vitiligo, a condition that destroys the cells that produce melanin, causing white patches of skin that are especially noticeable on dark skin. She had a lot of questions but few answers. She didn’t know anyone with vitiligo who she could talk to. She looked for a support group but couldn’t find any in Florida.
So after nearly four years seeking help, Johnson created her own support group: Beautifully Unblemished.
“That’s when I got up the courage to say, ‘You know what? I am not going to allow vitiligo to dictate who I am and what I do,’ ” she said. “Vitiligo doesn’t have me. I have it.”
Beautifully Unblemished was founded in 2018 by three members, including Johnson.
The support group now has over 175 members statewide.
Edith Hernandez, 62, was shopping when she ran into Johnson’s husband, Jeremy, who told her about the support group. “It was really hard for me until I moved here to Florida, and one day I was at CVS and met Tonja’s husband,” says Hernandez. “He was like, ‘Oh, I just want to let you know there is a support group, and my wife started it.’ And it was great to see other people had it and are going through the same thing.”
Johnson said that is Beautifully Unblemished’s mission: “I’m encouraging them and giving them resources to have a better quality of life.”
Hernandez has been living with vitiligo for 15 years. Although studies say it isn’t hereditary, Hernandez’s younger sister developed vitiligo in her 20s. Their mother also had vitiligo before she died.
Christopher Meadors, 25, tells a different story. He belongs to the quarter of group members who are white.
He was a baby, just a year old, when his mother noticed her son’s leg was blue. She thought it was because blood wasn’t traveling to the leg. Tests revealed he had vitiligo.
When the pandemic hit, he got worried. He didn’t know how the coronavirus would affect those with vitiligo. He didn’t know anyone else with the condition to talk to either. So he started looking for a support network, and found Beautifully Unblemished on Facebook. Now he says the group has helped him open up about his experiences with vitiligo.
Dallas Williams was diagnosed last year at age 5. Her mother, Sheniqua Williams, says she first started noticing her daughter’s vitiligo when the pandemic started in March. Williams initially thought it was a cold sore, but later realized her daughter could have vitiligo.
“I can’t say that I am not scared anymore because I kind of am,” the mother said, “because she’s a brown girl, and it’s such a significant change.
“So it concerns me that people may say mean things to her. So we’re just trying to teach her self-love. To love herself, love the skin she’s in, and you know, love everything about herself.”
When children ask about her vitiligo, Dallas said she tells them, “they’re my special spots.”
Beautifully Unblemished helped Dallas connect with other children who have vitiligo, which allows her to feel more confident about her skin.
“I feel kind of sad that I can’t have my skin grow back to how it was,” Dallas said, “but I am happy because it’s beautiful. It makes me beautiful, and I love it.”