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Treatment team

One component of Riddel’s job is teaching parents about infusion—injecting clotting factor into their children’s veins. “I teach the parents how to stick their kids,” he said. “I’ve taught parents of 2- and 3-year-olds. That’s hard. It’s emotionally hard; it’s difficult to find a vein, difficult to get cooperation from a kid 85 But parents are part of a team.”

As soon as kids with the disease are old enough, Riddel starts working directly with them. Every year, he works at a hemophilia summer camp, a rite of passage for patients when they reach the age of about 7.

At the mention of hemophilia camp, Horyza grinned. “They teach you how to stick yourself,” he explained. “Then, that night at dinner, they give you your ‘Stick’ award—a decorated piece of wood. Most of us keep it. It’s precious.”

Another part of Riddel’s job is to visit schools to educate teachers and administrators about students with hemophilia. The standard is to encourage these students to participate in all but the most contact-oriented sports, like football, and manage bleeding episodes as they arise.

“[Educators] are concerned with how to approach an injury,” Riddel said. “The popular notion is that someone’s going to get cut and bleed to death. With hemophilia, you don’t bleed more; you bleed longer. It’s not like you’re gushing blood.”

Riddel advises schools to keep a supply of factor in the refrigerator in case of emergencies, and parents learn early on to carry supplies and a small cooler of factor with them everywhere.

“After Sept. 11, we had to supply everyone with letters so they could take the factor and needles on airplanes,” Riddel said.

Like many nurses who work with hemophilia patients, Riddel didn’t have a background in hematology, but “fell into” the job, after working in the ER and as a nurse clinician in infectious diseases. Because most nursing schools offer only basic information on hemophilia, he’s had to learn on the job.

“What’s nice about working in hemophilia is the [factor] manufacturers support a lot of training programs and so does the National Hemophilia Foundation. I go to some sort of hemophilia training every month,” he said. “I’ve had to become pretty sophisticated with the coagulation system.”

Because hemophilia occupies such a small health care niche, nurses in the field offer peer training and support, said Jennifer Maahs, PNP, RN, chair of the National Hemophilia Foundation’s Nursing Working Group.

“We interact a lot,” said Maahs, who works at the Indiana Hemophilia & Thrombosis Center in Indianapolis. “If I have a patient traveling to another state or who moves, we work together with other nurses for their care.”

Maahs worked with cystic fibrosis patients before moving into the hemophilia field nine years ago.

“It’s similar in some ways, but [cystic fibrosis patients’] prognosis is worse. Here, it’s the best of both worlds: [the patient continuity of] a chronic illness, with little mortality,” she said. “Some people with severe hemophilia have gone a few years without a serious bleed. We’ve had kids who have gone their whole lives without bleeding. And they are healthy, active at school, active at sports. I have one kid who’s a nationally ranked cross-country runner.

“When you think of someone with diabetes, even if you correct their blood sugar, they still have other problems,” she added. “The thing that’s exciting about hemophilia 85 if you correct [patients] properly with factor, they don’t have other problems that crop up if they don’t bleed.”