Owing to conflicting market exclusivity rights, the U.S. Food and Drug Administration (FDA) has partially rescinded its decision to approve BeneFIX and Ixinity for additional indications both therapies received last year for the treatment of hemophilia B, according to the National Hemophilia Foundation. Pfizer’s BeneFIX and…

At every annual event sponsored by the National Hemophilia Foundation, a particular room is dedicated to remembering those who died from complications of hemophilia. In the 1980s and early ’90s, many people lost loved ones during a period that became known as the “hemophilia holocaust.” A staggering number…

Most people probably have a handful of good stories to tell at parties, but someone with a rare medical condition never is at a loss for a new tale to tell. I recently led a workshop to help people in the bleeding disorders community craft their “elevator pitches,” which…

Exercises to control posture could improve joint health in children with hemophilia and should form part of regular rehabilitation programs, a study suggests. The balance disturbances uncovered in the study could provide early signs of musculoskeletal disorders that could be prevented or reduced through prompt diagnosis and therapy, researchers…

When my first son was 6 months old, we experienced our initial reception into the world of hemophilia. Until that point, his bleeding disorder had not reared its ugly head. This was his first internal bleed into a joint (his ankle), and we prepared to find a vein to…

“Fine.” People have asked hundreds of times how my family and I were doing — particularly my youngest son, Caeleb, given his hemophilia — and I’ve replied with that single word. Caeleb is now 15, and his hemophilia is under control. But several of his younger years were spent…

In past columns, I wrote about moments of absolute hopelessness — no more prevalent than the times when hemophilia reared its ugly head in my sons’ lives. There were many instances when powerlessness dominated my thinking as one of my sons screamed out in pain because he felt…

There is no shame in raising the white flag when caregiving challenges become too taxing. The white flag, an international symbol used when someone seeks a truce or ceasefire, usually is the last recourse after a long list of possibilities has been exhausted. For a parent or caregiver, it…

Rap sessions are common at bleeding disorder conferences. During these group discussions, people come together to talk about similar interests, such as a new diagnosis in the family, inhibitors, or what it’s like being a hemo parent. Facilitators help the participants ask questions of one another and have meaningful…

After an entire year of getting little exercise, I’ve finally decided to work out again. I’d gone several months without much physical activity, so I’m starting with jump rope fitness for body conditioning. So far, everything’s good. I’ve had to rearrange my schedule quite a bit and take more time…