TAMPA — When Tonja Johnson was diagnosed with vitiligo in 2013, she didn’t know where to turn beyond Google.
The progressive skin disease (pronounced vit-ill-EYE-go) causes areas of skin to lose pigmentation, creating pale patches on the body. The disease is estimated to affect around 1 percent of the population worldwide. But for Johnson, it felt like she was alone.
No one close to her suffered from the condition. And, as time passed, she began to lose more color from her skin. She learned how to cover up the blotches with makeup, but the process grew to be exhausting.
“It took up too much time,” Johnson said. “I got tired of hiding. I felt like I was hiding behind a mask.”
Johnson started researching online support groups across the country. Then she decided to start her own.
She started a Facebook group called “Beautifully Unblemished” and from there the group grew.
Across the state, the group now has more than 130 members, ranging from 4 to 78-years-old. The group stays in touch online, where they share day-to-day experiences and advice, and hosts events and meetups every couple of months.
The disease, which can progress rapidly, is often difficult to treat, said Dr. Michael Scannon, a Tampa-based dermatologist. It is often genetic and sometimes caused by sunburn, stress or exposure to certain chemicals. Though advances in research over the last 10 years have led to possible treatments that could slow or reduce color loss, it’s often cost-prohibitive and not covered by insurance companies that dub the treatments “cosmetic.”
“It’s way deeper than skin, when your body begins to change,” Johnson said. “...As a kid, I was teased and picked on for being the darkest in the family. Losing the color, the skin, that makes me feel like an African American, I’m losing that, but I’m not losing my identity. It’s a lot to take in mentally.”
Sandy Snyder, a physician’s assistant with the Florida Westcoast Skin and Cancer Center, said though the disease itself is not life-threatening, the psychological impact of the disease is significant.
“Vitiligo is a devastating disease,” she said. “It takes a huge emotional toll.”
Rafael Bassi moved to Orlando from New York a little over a year and a half ago. Soon after relocating, he was diagnosed with vitiligo.
It progressed aggressively.
“I wasn’t prepared mentally or emotionally to accept or confront my situation,” Bassi said. “I’m someone who always liked to be well dressed, well organized, on point. But vitiligo makes me feel like no matter how I organize or dress, it doesn’t matter.”
Once in a store, a man behind the cash register put on gloves before accepting his money. Bassi began to wonder if his wife would think of him differently.
“I thought my life was over,” he said.
From New York, his wife researched support groups online and found Johnson’s group. Bassi joined.
“When I started confronting this situation and talking about it, it’s helped me accept me what I am and what I’m becoming every day,” he said. “It’s an ongoing thing. Being part of the group has helped me a lot.”
Nicole Lewis found the group through Facebook and joined after her 14-year-old daughter Emma was diagnosed with the disease.
“There’s always that look that people give when they first see you,” Emma Lewis said. “I’ve kind of just gotten used to it. I can’t change it, so I just have to accept it. I don’t ever want to complain because there’s people who go through way worse things than just an appearance.”
But the group, she said, has given her a new source of support.
“It kind of just makes me know there are other people going through the same thing and I’m not the only one,” Emma Lewis said.
Later this month, the group will hold a photoshoot in Lakeland with a professional makeup artist and photographer. Johnson hopes it’s an event where people with vitiligo can celebrate their beauty and spread awareness of the condition.
“The more people who know what it is, that eliminates us being stared at, pointed at, whispered about,” she said. “That level of comfort that we can walk in the mall without worrying or go to a theme park and feel like our privacy is not being invaded.”