Health Hero: Tonja Johnson Brings Support to Vitiligo Community

Health Hero:  Tonja Johnson Brings Support to Vitiligo Community

by TIM CRAIG

 

When Tonja Johnson first saw a spot on her skin in 2011, she didn’t think much about it.

It was just an age spot, according to her mother, and Johnson accepted it and moved on. Eighteen months later, in 2013, the spots had grown in number and size and she knew there was a problem. A trip to a specialist at the University of South Florida confirmed her fears: she had Vitiligo.

Vitiligo, according to the National Institutes of Health, is a condition that causes patchy loss of skin coloring. It can occur at any age, and tends to progress over time, with larger areas of skin losing pigment. It affects two to four million Americans, with around 200,000 cases per year, according to the Mayo Clinic.

“I was devastated,” says Johnson. “At the time, parts of my arms and legs had these white patches and it was getting worse. I knew what it was but now how do I accept it? I kept thinking ‘Why me?’”

She experienced a range of emotions, including suicidal thoughts, as she tried to figure out what to do. None of the other members of her immediate family — her parents, nor her sister — had the condition. Her skin tone took after her father, who was darker, making the vitiligo more noticeable. The one thing she kept coming back to, the one thing that helped her through, was her faith.

“God kept letting me know that He’s got this,” she says. “I needed to get up, stop feeling sorry for myself, and embrace who I was.”

That moment of enlightenment led Johnson on a journey to seek out support and eventually start Beautifully Unblemished, a one-of-a-kind vitiligo support group in 2017 that has connected with people throughout the state of Florida and beyond.

Johnson’s journey toward Beautifully Unblemished started soon after her acceptance of who she was and a desire to connect with other people who had this condition. At the time, an Internet search for a vitiligo support group in Florida turned up just one result: The American Vitiligo Research Foundation in Clearwater, which focuses on children and their families, not adults.

The closest vitiligo support group for Johnson was the National Vitiligo Bond Inc. Foundation in Atlanta. There, she connected with the group’s founder, Natasha McCarthy.

“She began to tell me about how to start my own group,” says Johnson. “She really mentored me about starting Beautifully Unblemished.”

In 2017, Johnson started the group. The challenge was finding members.

“Before I was diagnosed, I never saw anyone with this, but once I was diagnosed, people kept coming across my path,” she says. “My sister said that there were several people in her church who had it; a young lady at my work told me her husband had it.”

Working through these connections and more has helped the group grow. Beautifully Unblemished meets face to face about every three months and every time more people show up.

“It’s crazy, it’s all been word of mouth,” says Johnson.

She attended the World Vitiligo Conference in Boston in 2018, and after introducing Beautifully Unblemished, she had four people from Florida seek her and the group out.

The Boston conference got Beautifully Unblemished registered nationally. From there, a Facebook group formed and more connections came: from Pensacola to Miami, Jacksonville to Naples, and everywhere in between.

Some of the connections come from unlikely places, like the young Venezuelan man living in Orlando, who had driven to Clearwater to find the research organization and seek answers. He could not find it, and found himself at a local business asking for help. A receptionist searched the Internet, and Beautifully Unblemished was the top result.

“I got a call from the receptionist who said, ‘I have a gentleman here who speaks no English, but he needs your help,’” says Johnson. “Thank goodness I work with several Spanish-speaking ladies and we were able to help him and connect with him.”

It’s that kind of work, an off-chance meeting leading to a connection leading to help, emotional healing and awareness that Johnson has grown to love.

“Working and touching lives gives me the satisfaction to get up and know I’m going to make a difference,” she says.

Making a difference means raising awareness. Through her efforts and in anticipation of World Vitiligo Day on June 25, Johnson received a proclamation from Gov. Ron DeSantis naming June at “Vitiligo Awareness Month in Florida.”

Johnson has planned a meet-up in June to celebrate Vitiligo Awareness at the Bahama Breeze in Brandon. In August, she is planning an Empowerment Seminar in the Miami area, to focus on helping people with self-esteem issues and coping strategies arising from vitiligo. From there, she will continue to raise awareness and spread acceptance of something she once tried to hide.

“I’m telling you I never imagined someone like me doing this,” she says. “Something that caused me pain has now become a passion of reaching others to give hope and encouragement. You can embrace the skin you’re in.”