Polk County Woman Creates Vitiligo Support Group

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POLK COUNTY, Fla. — A life-altering skin condition that can lead to depression has led a Polk County woman to start a support group.

  • Polk County woman Tonja Johnson starts vitiligo support group
  • Johnson started the group after having trouble finding one in Florida
  • Group now has around 45 members from all over Florida

Tonja Johnson was diagnosed with vitiligo nearly six years ago.

“It was like a death sentence to me because I was like … I have something else that my self-esteem has to worry about,” Johnson said.

The autoimmune disease attacks pigment-producing cells in the skin and causes patchy loss of skin color. It’s not contagious.

Johnson said her skin is now 80 percent white. As an African American woman, it wasn’t easy for her to deal with.

“We all go through different mental health issues. I myself was suicidal at one point when I was diagnosed. I didn’t want to live like this. I didn’t want to live with the blotches and the white spots on my skin. But I came to the realization it’s not about me, and it’s not about the skin — it’s about me getting off the floor and helping somebody else,” Johnson said.

She started the vitiligo support group, Beautifully Unblemished, in 2018 after having trouble finding one in Florida.

During a recent get together, a few of the members met up and discussed the hardest part of being diagnosed.

“The stares and the smaller kids not understanding,” said Rosa McKinzy Cambridge.

The members of the group come from many different ethnic backgrounds. The group also serves as a resource for parents of children with the disease.

“When she was diagnosed, for me it was hard because she’s young and kids can be very unkind, and the fact that I can’t fix it like I can fix other things — that was hard for me,” said Kristine Dugas, whose daughter has the disease.

The group setting allows the members to share their experiences so they can cope with this incurable disease together.

“I’ve had vitiligo for such a long time. It’s really comforting knowing that other people coming behind me will have some support,” said McKinzy Cambridge.

“It’s enlightening and inspiring to be in the company of others who look like me and understand what I go through. So starting the group has really been a blessing to me,” Johnson said.

Johnson said the group now has around 45 members from all over Florida. They meet quarterly.

The group’s next outing is a family fun day at The Alley at Southshore in Riverview on April 27. The group will gather there at 1 p.m.

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