The U.S. Food and Drug Administration (FDA) has restored its approval of BeneFIX as a routine prophylactic, or preventive, treatment for bleeds in children and adolescents under 16 with hemophilia B. Marketed by Pfizer, BeneFIX is a lab-made version of factor IX (FIX), the blood clotting protein that…
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Jennifer Lynne shares her journey with von Willebrand disease and hemophilia B, reflecting on the misconceptions women face, the power of patient documentation, and the importance of community support. She highlights how advocacy has shaped her life and why sharing stories can drive change in Hemophilia and Me.
I remember watching “The Wizard of Oz” as a little girl. While the visual effects now appear primitive compared with today’s high-tech productions, the movie scared me when I was a kid. The scene where Dorothy was trapped in her house as the tornado lifted it into the sky seemed…
Note: This story was updated Jan. 8, 2021, to clarify that the second set of experiments in mice and non-human primates used a research construct, not the gene therapy. Generation Bio has announced new data showing that its investigational non-viral gene therapy platform can increase levels of the clotting…
My nephew does not like needles. Actually, “hate” is probably a better word. He hates needles. This is not ideal, given that he has hemophilia. Recently, I was helping him practice IV infusions on a makeshift “arm” I created. As we talked, I told him, “You need to own hemophilia.
December not only marks the end of the year, but it’s also the time for my annual visit to the specialists at my regional hemophilia treatment center (HTC). I live more than two hours away from them, so I appreciate the convenience of telehealth appointments, which are far more…
Greetings! I’m writing from Orlando, Florida, my temporary oasis from the wrath of Hurricane Ian. Last week, my mom and I evacuated to this inland city from Punta Gorda, on the coast in the southwest part of the state. Staying was not an option as my mom is oxygen-dependent…
Novo Nordisk A/S has launched HemaGo XChange, a new web-based service portal for people with bleeding disorders. This platform will address the overwhelming demands that patients with hemophilia might face in the monitoring and sharing of information about their disease. HemaGo XChange allows patients to monitor and share treatment…
When I look back on the things my husband, Jared, and I did in our 20s, I sometimes wonder how we managed to get through them without more emotional or physical scars. We were young, impulsive, and convinced that nothing too serious could happen as long as we “managed things…