Summer camps for children with chronic diseases are booming

WASHINGTON, D.C. -- Summer camps just for children with chronic diseases are booming -- places where they can learn about epilepsy or finally meet someone else with Tourette's tics or slice open a cow's heart to see what's wrong with their own.

Now fledgling research suggests such special camps may offer more than a rite of passage these children otherwise would miss: They just might have a lasting therapeutic value.

"How do you live well with a chronic condition? I believe in part, the power of being amongst your peers normalizes the experience," said Sandra Cushner-Weinstein, a social worker at Children's National Medical Center who founded the hospital's weeklong camps for five illnesses and is studying the effect on campers.

Special-needs camps got their start in the 1970s for children with cerebral palsy and cancer. Today there are more than 130 asthma camps around the country, and dozens for muscular dystrophy, diabetes, hemophilia and sickle cell anemia. Even rare diseases are getting camps, like ones Weinstein organized for Tourette's syndrome and neurofibromatosis, a genetic disorder where multiple tumors form on or just under children's skin.

In many ways, chronic-disease camps are like any summer camp, with some extra safety steps and accommodations.

"They have this zip-line there," 12-year-old Andrew Frascella of Rockville, Md., said excitedly about epilepsy camp. "It's really high above the trees. You get strapped on and go flying."

But some of these camps go beyond recreation to also teach children about their illness in ways they may never have experienced -- with doctors and nurses clowning around in shorts instead of scrubs, and counselors with the same illness.

Cardiology nurse Betsy Adler said children born with heart defects often don't know exactly what's wrong with their hearts, just that they're sick or need an operation. So she brings about 20 cow hearts -- the same anatomy as a human's, just much bigger -- to Cincinnati Children's Hospital's Camp Joyful Hearts.

The campers help slice them open while cardiologists point out valves, chambers and arteries, and explain to each child who asks how their own heart is different.

Or consider epilepsy. You can't see your own seizures, but children do see parents worry and classmates withdraw -- a fellow second-grader once asked Andrew if his seizures meant he was "crazy." Weinstein contends how patients imagine their seizures appear can be far worse than reality.

Andrew Frascella's said his happy-go-lucky son rapidly became shy and isolated when seizures began at age 8. Joe Frascella, himself a government neuroscientist, was skeptical when Weinstein and her husband, Andrew's neurologist, pushed the camp stay.

But Andrew remembers that his first trip to Camp Great Rock at 8 as the time he was no longer left out.

"You get to learn about each other, how you're not different from everyone," he said. Plus, "It was kind of special because not just anybody can go there."

Joe Frascella remembers being amazed that Andrew returned able to volunteer to acquaintances that he had epilepsy.

"It wasn't something he had to hide. ... That was tremendous," Frascella said. He saw Andrew gradually become happier both as he finally found medication that worked -- his seizures today are well-controlled -- and increased his base of camp friends.

Despite patient advocacy groups and children's hospitals increasingly sponsoring camps, there has been little research showing they can provide more than a fun experience. A few studies show short-term behavior improvements; others found none.

But Weinstein kept hearing parents talk about children learning to cope at camp. So with government funding, she paired with a team of neuroscientists to track children who attended epilepsy camp for three consecutive years. Standard psychology measures showed the children grew steadily better in social interaction, with some improvements in how they communicate and handle responsibility, too, Weinstein reported in the journal Epilepsy & Behavior last year.

The findings aren't a surprise to Connor Chilton, 16, of Alexandria, Va. He eventually outgrew his epilepsy, but still volunteers as a camp counselor because he remembers vividly being about 6 and witnessing a fellow camper's seizure. The adults acted "like it was normal," he said. "I know personally that made me feel more normal about having seizures."