When I was diagnosed with bleeding disorders in the 1970s, the world of hemophilia looked very different. Treatments were scarce, hospital visits were frequent, and the idea of living a “normal” life seemed like a distant dream. Today, I meet children and young adults with hemophilia who’ve never known…

Symptomatic spinal stenosis — the narrowing of spaces within the spinal canal, which can put pressure on the spinal cord and nerves — may be a complication in aging people with hemophilia, a study in Ireland reports. The risk of developing the condition increased with age, but it was…

I recently had the honor of attending the National Bleeding Disorders Foundation’s (NBDF) Bleeding Disorders Conference in Aurora, Colorado. I’m grateful for a travel grant I received from the NBDF that made it possible for me to attend. The conference was a fabulous and energizing mixture of connecting with…

Special care is needed to manage pregnancy and childbirth for women who have or are carriers of hemophilia, yet many hemophilia treatment centers in Italy don’t have a specific protocol in place for this type of management. Indeed, fewer than 1 in 5 centers in the European nation were…

The other day, I asked my husband, Jared, if he’d ever consider leading a harm reduction seminar for the teens in his hemophilia organization. His immediate response was, “Of course — but would the parents be ready for that conversation?” That question hit me. As…

A team of U.S. scientists discovered a naturally occurring F8 gene mutation that leads to increased activity of the factor VIII (FVIII) coagulation factor and enhanced blood clotting, offering new insights into the treatment of hemophilia A. The mutation was identified in a young man susceptible to excessive blood…

Total hip replacement surgery for hemophilia patients is usually successful in creating a more functional joint, according to a systematic review study. However, clinicians and patients need to be aware of potential risks, such as infection and bleeding. “This paper confirms the findings of previous studies that [[total hip replacement…

Some days it’s easy to see the cracks in our family’s situation — the unpredictable costs, the logistics of keeping medication on hand, the mental load of being a partner to someone with severe hemophilia B and epilepsy. But every so often, I remind myself that there are…

In a real-world study in South Korea, preventive treatment with Adynovate (rurioctocog alfa pegol) was shown to be effective at preventing bleeding episodes among most children and adults with hemophilia A  — findings that line up with those from clinical testing. In fact, “76.1% of patients on prophylactic…