There’s a common misconception that people diagnosed with hemophilia — a blood disorder — are forced to live their lives inside a protective bubble.

That may have been true at one time, but thanks to modern technology and the supporters of a program called Leading Edge, Oregon teenagers with hemophilia were given the opportunity to explore their independence and push their personal boundaries last weekend at Camp Collins in Gresham.

“Leading Edge specializes in self-efficiency and personal responsibility for teenagers with bleeding disorders,” said Patrick Torrey, founder and leader of the program. Leading Edge, sponsored by Wyeth Pharmaceuticals, runs programs and camps for hemophilia foundations all over the country.

Roughly 15 counselors-in-training for Camp Tapawingo, a week-long camp in The Dalles for young Oregon hemophiliacs that will be held in early August, were invited to attend the three-day pre-training camp hosted by the Hemophilia Foundation of Oregon from June 26-28.

The abundance of knowledge and expertise on hemophilia represented in the camp staff members, which includes doctors from Oregon Health & Science University’s Hemophilia Center, provides parents with an unusual level of comfort and campers with a safe escape away from home.

Unfair stigma

When Kimberly Jackson’s son was young, school nurses would call every time he so much as bumped into a wall.

“I would be like ‘OK, is he ready to go back to class now?’ ” Jackson recalled saying.

Husani Jackson, now 15, has battled the stigma that comes with hemophilia since he was diagnosed with the disease 10 years ago. With only 20,000 hemophiliacs in the United States, the disease is rare and hemophiliacs are often left sidelined out of fear of even the slightest injury.

This year marks Jackson’s second year at the camp.

“He went to camp last year and absolutely loved it,” his mother said. “He came home and talked about it all year.”

Jackson found refuge among people his own age — diagnosed with the same condition — who know what it feels like to be a hemophiliac.

Campers ages 15-21 learned about taking positive risks and developing goals, Torrey said.

“This group really becomes the mentors for the younger kids.”

Surf’s up!

The group practiced team-building skills through the camp’s Challenge Course on Friday, June 26. Suspended 30 feet in the air in a harness supported by fellow campers, they were forced to rely on each other to walk across roughly 40 feet of wire. Later on in the evening, the campers traveled to a beach house on the coast for two days of surfing and barbecues.

Growing up near the ocean’s surf may sound like a picture-perfect lifestyle. But for a child with hemophilia, it can be far from ideal.

“I’m a hemophiliac and I grew up in Huntington Beach,” said Jim Dawdy, 24, who works at Oregon Health & Science University’s Hemophilia Center and helps out at the camp. “My friends would ask me to go surfing, and I was like, ‘You’re crazy, I can’t do that.’ The first time I surfed was with (Leading Edge).”

New freedom

Modern medicine has introduced a highly expensive type of preventative treatment not readily available in Dawdy’s youth. By infusing their bodies with the missing protein before activity, hemophiliacs can participate in almost any activity for the following eight hours without fear, Dawdy said.

“We can infuse ahead of time and our bodies will clot just like normal,” Dawdy said.

Before moving to Aloha, Jackson grew up in Long Beach, Calif., and also had never surfed before the councilor’s pre-training camp last weekend.

“I wanted to be a councilor, so I can help other people like me, so they can understand their disease,” Jackson said.

Things to know

More information

Visit the Leading Edge Web site at www.patricktorrey.com. For more information about Camp Tapawingo in August, visit www.hfo.info.

What’s hemophilia?

Hemophilia is caused by a lack of an active blood clotting factor in the body. Victims of the disease experience abnormal bleeding, easy bruising, and bleeding into joints and muscles that causes pain and swelling.

Copyright 2009 Pamplin Media Group