ANDERSON — Denise Sawyer Chamberlain notices the glances, the double takes and the looks she gets because of her vitiligo.
But stare for too long and she’ll tell you about it.
For Chamberlain, a resident of Anderson, empowering those afflicted with the disease is her chief goal. However, educating others about vitiligo and teaching them that it’s not contagious or deadly is also vital.
That’s also the mission of the Fearfully and Wonderfully Made Indianapolis Vitiligo Community: stopping the bullying and rejection of children and adults who have vitiligo.
A support group like this one would have been a godsend for Chamberlain when she first discovered she was losing her color near her fingernails when she was 10 years old. Growing up, she didn’t have anyone to turn to and it made dealing with her vitiligo difficult.
“In my family, I’m the only one that has vitiligo,” Chamberlain said. "My mom’s household and my dad’s household, there was always confrontation. I feel like that really affects me because they never asked me how I felt.”
According to the National Institute of Arthritis and Musculoskeletal and Skin Diseases, vitiligo is a pigmentation disorder in which melanocytes — the cells that make pigment — in the skin are destroyed. This results in white patches on skin in different parts of the body. Similar patches can also be found on tissue that lines the inside of the mouth, nose and retina. It can also affect hair color as hair that grows on affected areas sometimes turn white.
Denise Blanks, president of Fearfully and Wonderfully Made, has a simpler way of explaining it, especially to children, who may not have any idea about what’s happening to their, or their friend’s, body.
“We have soldiers in our body that fight disease and our soldiers are confused,” Blanks said. “They’re going after our color and taking it away.”
Children with vitiligo are a huge concern for Chamberlain and the rest of the support group. They recognize that bullying and teasing can happen at school for children who have the disease and the effects can be harmful.
While vitiligo isn’t physically painful, the emotional and psychological distress can be devastating.
The cause of vitiligo isn’t known but doctors and researchers have several theories.
One is that people inherit genes that make them susceptible to de-pigmentation. Another more widely accepted view is that vitiligo is an auto-immune disease in which the body’s immune system attacks and destroys pigment-producing cells.
Though not scientifically accepted, another theory is that a sunburn or emotional distress can trigger the disease. Many members of the support group can point to a specific moment in their lives where their vitiligo started or got worse.
A common misconception, according to Blanks, is that people can catch vitiligo by touching someone who has it. That’s not so, says Blanks, who gets asked several questions from kids and adults ranging from whether or not she’s going to die or if she’s been in a fire.
Treatments like light therapy, creams or fading the rest of the pigmented patches of skin white exist. A common, albeit temporary, fix is makeup.
Using cosmetics is common within the Indianapolis-based support group, but many have stopped using them because their vitiligo spread too far, and the cost of makeup has become prohibitive.
Chamberlain recalls driving to Indianapolis for a football game with her friends and her child. After getting all the way to the parking garage, her son had an accident and, in the midst of cleanup, she rubbed off some of the makeup on her hands. Not wanting to be out in public with her spots showing, Chamberlain and her friends went to go buy new makeup and missed the first half of the game.
She eventually stopped wearing makeup after a little girl with vitiligo came to the support group for help and Chamberlain started having flashbacks to how her life was when she was 10.
The decision happened quickly for Chamberlain.
“In that moment, it was so fast and it was something I had to do,” Chamberlain explained. “I’m going to make sure she sees her potential. Her mom says she’s doing so much better. She doesn’t rely on the support group anymore; she’s doing everything she wants to do.”
The decision not to wear makeup popped up at different times for other members of the group.
“I had gone to Ulta (Beauty) and bought $90 worth of makeup to cover up my vitiligo,” Janay Watson said. “I didn’t want to wear the makeup and I only did it because I didn’t want people staring at me, but it only caused more stares.”
Since coming in contact with the support group, she doesn’t wear her makeup much anymore.
JèNice Bolds, who has been a teacher for 20 years, has never worn any makeup to cover up her vitiligo. For her, wearing pounds of makeup wasn’t appealing and she wasn’t trying to, as she puts it, look like a clown.
The biggest hurdle for her to overcome was the scared reactions of her students whenever they saw her.
“As a teacher, when I had children frightened, it was not something I could deal with,” Bolds said. “I can deal with inquisitive, but when children are frightened, that broke my heart. I’m not a monster.”
Each woman is at different stages with their vitiligo. They've each come to terms with the disease in their own ways. Still, even though they’re comfortable in their own skin now, there are some days they can’t deal with people looking them up and down.
But knowing how to deal with the ups and downs is crucial, according to Blanks. On days she can’t stop and talk to everyone that is curious about her vitiligo, she wears a shirt that reads, "If you can wear your tattoos, then I can wear my skin."
She’s working on getting more made.
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