Kids with hemophilia find hope, fun at active camp


The Atlanta Journal-Constitution
Published on: 07/30/08

Seven-year-old Joshua Morton wears a silver medical alert bracelet for his bleeding disorder at all times, but his new flashy green band may be more significant at "Camp Wannaklot."

The weeklong overnight camp 50 miles east of Atlanta is home to 160 children with hemophilia and other inherited bleeding disorders.

Courtesy of David Burke
Collin Johnson rock climbs at 'Camp Wannaklot,' a retreat for kids with bleeding disorders.
 
BLOOD DISORDERS
What is hemophilia?
Hemophilia is an extremely rare inherited blood disorder in which the body does not have enough of a certain protein that is needed to form clotting. It is estimated that about 17,000 people in the United States have hemophilia. It affects almost exclusively boys.

Other inherited blood disorders
Von Willebrand disease is a more common inherited bleeding disorder affecting boys and girls. Most people with VWD have a mild case, suffering from lots of bruises and nosebleeds, and it often goes undiagnosed. It is estimated between 1 percent and 3 percent of the population has an inherited bleeding disorder.

• About "Camp Wannaklot" (Camp Want to Clot)
It began 15 years ago with just 30 children and has grown to 160 children. The camp is free and sponsored by Hemophilia of Georgia, which holds several fund-raisers throughout the year to help cover the cost of the camp. www.hog.org

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Hence the camp name: "Want a Clot."

Wannaklot is a traditional camp experience, complete with field games like Red Light-Green Light. It's a retreat for kids to go rock climbing and fishing and stay up late chatting with cabin mates who share a rare bleeding disorder. And the camp also weaves in workshops designed to help kids manage the disease, which still requires ongoing attention.

Joshua, for example, learned to self-administer his injections after making a pact with his cabin mates. After the group of seven boys mastered the injection, they went swimming.

By passing a swim test, Joshua earned the green plastic bracelet, allowing him to swim in the deep end and slip down the curvy water slide.

And that green bracelet — proudly worn here by many of the boys and girls from across Georgia — is a symbol of medical advances for inherited bleeding disorders that once forced children to live in a protective shield.

In generations past, children with hemophilia — which involves a missing protein that helps clotting — were often crippled by internal bleeding or lived in constant fear something as minor as a sprained ankle could turn serious.

Hemophilia is often misunderstood. People with hemophilia do not bleed uncontrollably from a simple cut or scratch. The problem is bleeding inside the body, especially bleeding inside the joints — like knees, elbows and ankles.

Dr. Amy Dunn, on-site doctor and hematologist at Children's Healthcare of Atlanta, said a shift in treatment and new medicines are helping prevent bleeding episodes and stave off complications such as crippling arthritis.

In the past, injections were given after a fall or bleeding episode. Now they are done regularly as a preventive measure.

And as the camp, which is free for the campers, kicked off its 15th year, Dunn sees great hope.

As recently as the 1960s, treatment was virtually nonexistent and most children with severe hemophilia died in childhood or early adulthood.

By the 1980s, a new wave of treatment emerged, but the medicine — made with blood products — was contaminated with HIV and hepatitis C, infecting 7,500 hemophiliacs (about a third of the hemophiliac population), including Ryan White, who became the young poster child of HIV/AIDS in the 1980s.

But today, the synthetic treatments (no longer made with real blood) are safe and infusions can now be administered at home.

Chip Hearn, a 41-year-old camp counselor, sees the advances as he watches a group of boys bike ride at Camp Twin Lakes. He once went to the emergency room after twisting a knee playing a kids parachute game.

In contrast, when a boy fell off his bike this week at camp, his knees were cleaned with alcohol and he "went back to playing."

Managing the disease is still up against heavy obstacles. Treatment costs — which can include as many as three-times-a-week injections — are enormous. Annual costs for treatment for a 7-year-old boy with hemophilia can be between $100,000 and $200,000 a year, said Dunn, adding that a child can reach his or her lifetime maximum insurance by an 18th birthday.

But Dunn said there's no reason to think the inherited bleeding disorders will cut a child's life short.

"There is great optimism today," Dunn said. "They should have a normal life span."

Stormy Johnson said she can't think of anything her 9-year-old son, Collin, can't do.

And then she corrected herself.

"Except have a Mohawk haircut. I won't let him have one," said Johnson with a smile.

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