I’ve lost count of how many times I’ve seen phrases like “victims of hemophilia” or “afflicted with hemophilia” in local news articles. Sometimes the phrase is “suffering from hemophilia.” To many readers, these words might sound sympathetic — even caring. But to those of us…
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Treatment with the extended half-life (EHL) therapies Eloctate (efmoroctocog alfa) and Alprolix (eftrenonacog alfa) was found to safely and effectively control bleeding during major orthopedic surgeries in people with hemophilia A or B, according to real-world data from two Italian centers. The therapies helped patients maintain…
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.
Last in a series. Read parts one and two. For 21-year-old Domenic Catrine, hemophilia B once dictated every part of life, from wearing a helmet during childhood playtime to college routines shaped by weekly factor infusions. Then he underwent gene therapy during his sophomore year in…
Hemophilia has a substantial impact on sexual function and well-being for many men with the disease, but they rarely discuss it with their doctors, a study from the Netherlands found. “To address this gap, tools designed to provide and assess information about sexual functioning and well-being to normalize the…
Profilnine (factor IX complex) is a plasma-derived factor replacement therapy approved to prevent and control bleeding episodes in people with hemophilia B.
Men in South America with severe hemophilia A or B are hit with both direct and indirect costs related to the genetic disease, which also affect quality of life, a new study reports. As much as 99% of the direct costs of hemophilia were related to factor…
Scarcity mindset is the belief that something you rely on will one day run out. It’s most often talked about in the context of money, which resonates with me deeply. As a neurodivergent person married to someone with hemophilia, money has always felt like one of my shields…
The cost of Hemgenix (etranacogene dezaparvovec), a one-time hemophilia B gene therapy, will be covered for patients living in Canada through the country’s public healthcare system. The letter of intent between CSL Behring Canada, Hemgenix’s developer, and the pan-Canadian Pharmaceutical Alliance (pCPA) excludes Quebec. The company said…
Second in a series. Read part one. For most of his life, 21-year-old film student Domenic Catrine assumed weekly infusions were his destiny while living with hemophilia B. By the time he entered college, the rhythm of mixing vials and finding veins had become routine — even if…