It’s easy to spot physical damage, such as swollen joints, nosebleeds, limps, and bruises, when one suffers from a bleeding disorder. But the psychological and emotional damage that may result is not as easy to see or treat. A U.S. survey of hemophilia patients, published a few years…

I recall an early experience with anxiety. I was standing at the back of the church, ready to appear before the congregation to offer the sacrament of communion. But something held me back. The more I fought my feelings, the more I struggled. I took labored breaths as I stood…

Clotting proteins that are missing or are defective in hemophilia can directly affect the activity of cells responsible for maintaining bone health, a study found. The findings shed new light on why bone problems are a common issue among people with hemophilia, researchers said. The study, “…

Children with severe hemophilia A with blood group O are not at increased risk of developing neutralizing antibodies against factor VIII (FVIII) replacement therapy, a study found. The study, “Blood Group O Does Not Increase the Risk of Inhibitors in Severe Haemophilia A: Data from the…

Living with hemophilia B and von Willebrand disease means getting used to things that most people would consider unusual. Bruises appear without explanation. Minor injuries take longer to heal. A routine dental visit requires more planning than most people would ever imagine. And sometimes, the body sends…

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…

I’m happy to finally be an official member of the Father’s Day club. I’ve learned much from the way my own family raised me. It’s an uphill battle raising our daughter Cittie with the occasional bleed dragging me down. But seeing her mature so quickly…

Letting a doctor go can feel like a radical act, especially when, like me, you live with a lifelong bleeding disorder. Many of us are taught, implicitly or explicitly, to be grateful for any care we receive, to avoid rocking the boat, and to trust that the person with the…

The European Medicines Agency (EMA) has validated BioMarin Pharmaceutical’s new application seeking approval of its investigational one-time gene therapy Roctavian (valoctocogene roxaparvovec) for severe hemophilia A. The application was resubmitted to EMA following a request for longer follow-up data from the Phase 3 GENEr8-1 clinical trial (NCT03370913),…

Nearly two-thirds of children with severe hemophilia A given once-weekly Altuviiio (efanesoctocog alfa) in a Phase 3 clinical trial were completely free of bleeds over about one year of treatment. That’s according to new findings from the recently-completed XTEND-Kids study (NCT04759131), which were presented as late-breaking…