When I was diagnosed with hemophilia B and von Willebrand disease as a child, there were no choices in terms of treatment strategy. Treatment for me came in the form of intravenous blood products administered only in the hospital. Fast-forward to today, and I’m fortunate to have options…
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Stimate (desmopressin acetate) was a nasal spray developed to control bleeding in people with mild hemophilia A that has been recalled and currently is unavailable. The product was sold under the brand name Octim in Europe and Octostim in Canada.
A friend called to tell me her teenage daughter finally received a diagnosis of mild hemophilia. Her daughter experiences bleeding complications and had been seeking a diagnosis for more than two years. While it is a relief to have one, it is another story to figure out what the…
I will never forget the night I was ordained as an elder in full connection in the United Methodist Church. We were about three and a half hours away from home at a church in the small town of Clovis, New Mexico. My ordination took place at the close…
Last updated Aug. 1, 2024, by Marisa Wexler, MS  Fact-checked by Joana Carvalho, PhD What is Novoeight for hemophilia? Novoeight (turoctocog alfa) is a recombinant, or man-made, clotting factor replacement therapy approved to prevent and treat bleeds, including those occurring during surgery, in people with hemophilia A.
The U.S. Food and Drug Administration (FDA) has placed a clinical hold on Sigilon Therapeutics’ Phase 1/2 study evaluating the investigational therapy SIG-001 in adults with severe or moderately severe hemophilia A. The move comes after a serious adverse event (SAE) occurred involving one of the three participants…
Prophylactic treatment for hemophilia can help people with the disease avoid unemployment due to disability, a study reports. Hemophilia has a negative effect on a person’s employability. A 2022 global report by the World Federation of Hemophilia indicates about 18% of hemophilia patients see their employment status impacted…
Grab the factor, syringes, butterfly needles, drapes, Band-Aids, self-adherent wrap, sharps container, and tourniquet! These things are usually what comes to mind when we think about hemophilia care. Medical supplies are the first thing we think of when we plan for day-to-day life with hemophilia. Preventing and treating bleeds…
A new collaboration between St. Jude Children’s Research Hospital and the World Federation of Hemophilia (WFH) is aimed at helping blood disorder patients in countries where they may not receive regular treatment. The partnership’s centerpiece will be a program to conduct a gene therapy clinical trial in…
https://www.youtube.com/watch?v=sK2EIwmIYPo This video from the Bleeding Disorders Community focuses on sports for children with hemophilia. It explains that physical activity is important for people living with hemophilia, as it helps build muscle strength and maintain physical fitness, but that not all sports are suitable for those living…