People with hemophilia and their families need to learn about treatment recommendations, ways to cope with pain and how to advocate effectively. The National Hemophilia Foundation (NHF) Inhibitor Education Summits provide an opportunity to learn all of these things—and to connect with people familiar with the challenges of hemophilia with inhibitors.
Inhibitors are produced when a person with hemophilia receives clotting factor and the body’s immune system perceives it as an antigen—a foreign substance—and creates an antibody, or inhibitor, to neutralize it. As a result, people who develop inhibitors find that clotting factor is either much less effective or ineffective. About 25% of people with hemophilia A develop an inhibitor, compared with about 1% to 4% of people with hemophilia B.
The 2010 Inhibitor Education Summits, held August 5–7 in Houston and August 12–14 in Boston, offered people with hemophilia with inhibitors and parents of children with inhibitors four tracks:
- Hemophilia With Inhibitors 101
- Hemophilia With Inhibitors 201
- Young Men With Hemophilia With Inhibitors
- Men With Hemophilia With Inhibitors
Each track had sessions focusing on education, advocacy training and peer-to-peer support. Faculty comprised physicians, social workers, physical therapists and nurses.
“Explain It to Me Like I Am in Kindergarten: Talking to Your Child About Inhibitors” gave parents whose children had recently developed an inhibitor tips on how to explain it. “The Future of Treating Inhibitors” discussed new research findings.
Teens with inhibitors learned how to strengthen their joints via the “Wii Fit in Tech-xercise” and how to prepare for college and beyond in “Managing Transitions.” They got candid answers to hot topics in “Ask the Experts: The Truth About Sex, Drinking, Drugs, Tattoos and Piercings.”
Adult men attended sessions on the medical issues they face as they age with hemophilia, the prospect of orthopedic surgery and managing pain. For all attendees, there were group discussions allowing people to share their experiences.
Inhibitor Summit Youth Program
For children with hemophilia with inhibitors and their siblings, the summits provided an engaging youth program. Hip-hop choreographer Jecorei Lyons taught a dance number, and musician Sam Doughty got kids unleashing their inner Animal from The Muppet Show with bucket drum circles. At the final night dinner, the kids performed their dance and showed off their new drumming skills.
Rhoda Herrington, of Brunswick, Georgia, whose 10-year old son has an inhibitor, said the Boston Summit offered a welcome respite from everyday stresses. “It’s a getaway for me—from trips to the emergency room, from all the ice packs, from everything we deal with,” she said. “The most important thing for me is networking with the other parents. I feel the love in the air, the unity, and I draw strength from hearing the stories, knowing we’re not the only ones going through this.”
The Inhibitor Summits are supported by an educational grant from Novo Nordisk.