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Paris Feltner is showing me her protective hood. It looks sort of like a cross between a beekeeper’s veil and a welding mask.
“This is a UV-absorbing plastic and we got it from London. And then we brought a cute hat so people would know I was a girl. ‘Cause most of the time they don’t think I’m a girl. So you velcro on the plastic to the hat.”
Paris is most definitely a girl. She’s 13 and does jazz, tap and ballet.
But strangers often can’t see her face, because she must wear the hood whenever she goes out during the day. Paris has xeroderma pigmentosum, a genetic disease which leaves her defenseless against the sun.
“Our skin doesn’t repair itself, it just goes right straight to cancer.”
A disease like that means lots of stares, lots of questions, and lots of playing outside in the dark. It can be isolating, to say the least.
But at Camp Dermadillo, Paris fits right in.
“Camp is awesome. Last night we went on the zip line and it’s like 40 feet in the air and we did it at night and it was really dark and it was really scary. So your heart goes ‘hoo!’”
For kids like Paris, there’s also night swimming, night horseback riding, and anything else that other campers might do during the day.
Not all of the kids at Camp Dermadillo have to stay out of the sun. But some of them have to be careful about sweating and overheating.
The camp is one of six sponsored by the American Academy of Dermatology. Dr. John Browning is a pediatric dermatologist in San Antonio. He started this camp in 2005.
“It’s not a private problem, it’s not like diabetes that they can hide from other children and other people. But it’s something that’s on display for the world to see. And they may be the only child at their school who doesn’t have any hair or has an unusual red flaky skin problem. And they stand out.”
Koby Carter is an eighth grader from Beaumont.
“I get picked on a lot.”
Koby has eczema and ichthyosis, a condition that causes flaky or scaly skin.
“Everybody doesn’t really understand me. And it’s just…hard.”
But it’s not hard at camp.
“I get to get away and hang out with people I really relate to.”
Still, the counselors here don’t make a point of talking about skin problems or self-esteem.
This is a chance to get away from all that.
(Positions! Positions! And laughter)
In their cabin, the 12 year-old girls are rehearsing for the talent show.
(Dancing to Rhianna’s ‘Disturbia’)
Holly Novak and Ghazal Premjee are cabinmates. Both have severe, sun-sensitive eczema.
“Over here I have like a second family.”
Ghazal is going into sixth grade, Holly into seventh. Holly tries to prepare her friend for the social minefields of middle school.
“There are some people that go around in the hallways kind of like just a big pack of wolves, and they’ll find one easy little target that they think they can just trample all over. And they just have fun with it.”
But Ghazal sounds ready for the bullies. Her skin may be fragile, but she speaks with a hard-earned toughness.
“School is not for popularity, fashion or for looks. It’s for learning and getting ahead in your future. So if you know people who do that just say it in their face, ‘Do not make fun of me, I am a human and I’m happy the way I am.’”
Topical advice for everyone headed back to school, no matter the state of their skin.
From the KUHF Health Science and Technology Desk, I’m Carrie Feibel.