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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The cost of the one-time hemophilia B gene therapy Hemgenix (etranacogene dezaparvovec) will now be covered for eligible patients in Germany through the country’s public healthcare system. This comes through a reimbursement price agreement between developer CSL Behring and GKV-Spitzenverband, the German National Association of Statutory Health…
Recombinate (antihemophilic factor recombinant) was a recombinant (lab-made) clotting factor VIII (FVIII) concentrate that was approved to prevent and control bleeds, including those occurring during surgery, in children and adults with hemophilia A. It was administered via intravenous, or into-the-vein, injection.
My alarm rings every day at 7 a.m. I get out of bed, brush my teeth, take my medications, and start my day. As the coffee maker begins to brew a fantastic cup of decaffeinated piñon coffee, I take my girls — my dogs, Laggie and Hildie — outside. I…
Despite high rates of bone health issues in hemophilia and von Willebrand disease (VWD), the routine use of DEXA scans remains low across hemophilia treatment centers (HTCs) in the U.S., a study reports. DEXA, or dual-energy X-ray absorptiometry, is a type of imaging test that uses low-dose X-rays to…
Life when you’re married to someone with severe hemophilia B often feels unpredictable. One moment, everything seems fine, and the next, a spontaneous bleed or unexpected health concern throws everything into chaos. Over the years, I’ve learned to stay on high alert, always ready to shift gears at a…
About 30% of people hospitalized due to acquired hemophilia have a bleeding event, while 17% report a thrombotic, or blood clot-related complication, such as stroke and deep vein thrombosis, a nationwide U.S. study finds. Patients ages 65 years and older, and those with thrombotic events were more likely to…
Children with hemophilia have problems with dynamic balance — the ability to maintain balance while moving — and an increased risk of falls compared with healthy peers, according to a new study by two researchers in Turkey. The findings showed, however, that such impairments were not related to joint…
“As a woman with hemophilia, what situations cause you anxiety?” a friend recently asked me. What a great question! I loved that she added “as a woman” because women with hemophilia can experience stressors that men with hemophilia don’t. Many anxiety-provoking circumstances affect men and women with hemophilia…
I’ve been a fan of collecting fountain pens since I was a teenager. As a writer, I’ve always believed that having the right tools — pens that glide effortlessly, inks that flow just right — makes the writing process more enjoyable. And for me, fountain pens have been…