It's a condition that robs the skin of its color. Physically, vitiligo is not painful. But talk to patients young and old, they'll tell you it is emotionally devastating.
Many choose to cover up their spots with clothes. Others wear makeup. But more and more kids are embracing their vitiligo and choosing not to hide it.
Tanner Fogler of Tallahassee is a one of those patients. He's a high school freshman and a standout on the lacrosse field. Still, every once in a while, something else gets him noticed.
"Some kids ask me what happened to my legs," Tanner said, referencing his vitiligo spots. "On one of my shins, it's about half way up below the knee, the other one it starts off my skin and my knee."
Tanner's vitiligo started when he was in kindergarten. Doctors prescribed medicines, creams, and UVB treatments.
"For some reason, the body decides to destroy melanocytes, or the cells that give us color or pigment, and for some reason the body decides I don't need those cells any longer," explained Bonnie Nestler, a nurse practitioner and founder of the Psoriasis and Vitiligo Center at Bay Dermatology in St. Pete Beach.
It was a concern for Tanner's mother, Beth Fogler.
"At first, it was kind of scary, we had never heard of it. We never had any instances of it in our family and I worried about his psychological health or emotional health," said Beth.
As Tanner's vitiligo spread, his mother, Beth grew more and more scared.
"So many times, kids' reactions are to how they see their parents reacting. I was getting upset about it, and he was not," explained Beth. "It was kind of humbling to me, because I got so emotional about it at first, I kind of learned from a 5 or a 6 year old that it was OK."
It turned out Tanner had a different game plan. He stopped his vitiligo treatments. His sense of acceptance was cultivated by different teammates -- kids fighting the very same condition.
"I think vitiligo is more emotional than physical," explained Stella Palvides, president of the American Vitiligo Foundation. "I think it's one of the most devastating, heart-wrenching diseases anyone can have. And it's the most misunderstood and it's one of the most neglected."
Palvides runs the organization out of her house in Clearwater. She is also a vitiligo patient. She developed it at age 22, and has worked to make sure no patient feels different.
"I've had many people ask me if I was contagious. I stopped going to the beach, I started wearing long pants, long sleeves," she continued. "I've had children get spit on. I've had children that other children went up to them and touched them and ran away yelling, 'Disease!' I've had children that they're so ostracized they don't even want to go to school."
Stella's foundation brings young vitiligo patients from all over the country here to the Bay Area. During the getaway, kids play, parents learn, and families grow.
"I believe the children, when they come to our meeting and our conferences, they go home looking at themselves in a different light," Palvides said.
Tanner agreed. "I never met another kid with vitiligo. When I went down there, I met other kids and made new friends with vitiligo, who I could relate [to]."
But it's not just families like Tanner's who leave transformed. The conferences have also changed Stella Palvides.
"One of the children that comes to our meetings, Nadaisia, said, 'Miss Stella, you said God made us and there's nothing wrong with us and we shouldn't be embarrassed.' I gave her my word, I'll never do it again," said Palvides.
In the future, Tanner might reconsider treatments. Until then, he'll support other young patients as they journey down the path of acceptance.
"I'm proud of him," his mom added. "I love the idea of getting the message out there that it is OK to be different. You don't have to hide it, or cover it, or treat it."
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