TAMPA, Fla. — World Vitiligo Day is June 26. Tonja Johnson, the founder of Beautifully Unblemished Vitiligo Support Group, is making sure the day is celebrated.
What You Need To Know
- World Vitiligo Day is June 26
- Beautifully Unblemished, a vitiligo support group, is celebrating with an event at Missions BBQ
- The event is from 1 - 3 p.m., located at 5602 West Waters Avenue in Tampa
- People with vitiligo and their families are encouraged to attend
Johnson says the group is committed to promoting vitiligo awareness and providing valuable resources to help people deal with the impact vitiligo has on their lives. The group also provides a safe environment to share emotions and have discussions with others dealing with many of the same issues.
The event is Saturday, June 26, from 1:00 p.m. -3:00 p.m. at Mission BBQ at 5602 West Waters Avenue in Tampa.
People with vitiligo and their families are encouraged to attend.
Johnson was diagnosed with the skin disease in 2014. She had difficulty finding answers and help.
She says the condition itself isn't painful but it can have a psychological impact.
Johnson figured if she had questions, others did, too. So, she founded Beautifully Unblemished Vitiligo Support Group.
"We have resources for our vitiligo members such as mental health counseling," said Johnson.
"We do activities, we have seminars, workshops — just try and help them have a better quality of life," she said.
People with vitiligo and their families are welcome to participate.
Madison Martins, 18, is grateful for the resource. Initially, she took the diagnosis hard.
"It kind of defeated me for a while and I was just very upset. I probably cried for about a week," said Martins.
Johnson has lost color over about 85-percent of her body and says she has struggled with losing her identity, too.
"Just trying to find my identity, because you're losing the very skin that makes you an African American," said Johnson. "So just trying to find my identity and know that it's not just because I lost my skin color that doesn't make my identity."
Martins also struggled with her confidence.
"It made me feel kinda closed off to all my friends and just not doing what I wanted to do and not dressing the way I wanted to dress," said the 18-year-old who has since gained confidence and wore a sleeveless top for our interview, instead of covering up like she used to do.
That type of confidence is exactly what Sheniqua Williams wants for her 5-year-old daughter, Dallas Fountain who was diagnosed a year ago.
Williams talked with her daughter about vitiligo, describing the patches to her child as special beauty marks. Dallas is ready to explain when people inquire about the patches on her skin, her response:
"I just tell them that they’re vitiligo and they’re special spots that come on and make you special,” said Dallas.
All of these emotions and experiences are things patients and families can share with each other when participating in Beautifully Unblemished events. Williams says she and her family are learning what to expect.
"They kind of tell their stories and they kind of prepare you for what’s to come in the future,” said Williams.
Johnson wants everyone to embrace their spots.
“A feeling that I can live with this vitiligo and be successful with it,” said Johnson. “It doesn't have to have me. I can take control of it."
Martins is taking that control.
"It's part of me now and I'm part of it, so we're stuck and I'm OK with that,” she said. "I just use it to help me in everyday life. It's made me so much more confident in myself."
"I want her to be really, really confident,” said Williams of Dallas. "And I want her to be knowledgeable about what she has so when she’s approached, because people may stare and they may ask questions, I want her to be confident and happy about what she has."
These families are learning how to love the skin they’re in and Johnson encourages them to embrace it.