Prophylaxis with Idelvion (rIX‐FP) significantly improved clinical outcomes and quality of life for children with hemophilia B and eased daily life for their caregivers, Phase 3 clinical trial data show. The findings of the study, “Health-related quality of life in paediatric haemophilia B patients treated with…
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The levels of blood clotting factors, physical activity, and bleeding history are all potential risk factors for future bleeds in hemophilia patients under preventive therapy, a small review study from Canada suggests. “These and other risk factors for bleeding could be combined in a risk assessment model (RAM) for…
As a woman living with hemophilia, I’ve always understood that hemophilia is a man’s world. But I’ve also discovered that the men inhabiting this world are kind, compassionate superheroes with massive struggles of their own. My first National Hemophilia Foundation conference was in 2018 in Orlando, Florida. More than 2,800…
Several things often happen when a woman becomes a mother. The switch of motherly intuition flips on, and many moms can make predictions without reason. (That “gut” instinct usually serves us well.) The overwhelming love for our newborn baby is a connection that ignites and lasts a lifetime. This…
Living With Hemophilia: Ryan’s Story
https://www.youtube.com/watch?v=IhVOXnB-0KQ In this video from Bleeding Disorders Community, Ryan shares his hemophilia story. He was diagnosed as a baby with severe hemophilia but he doesn’t let the disease stand in the way of his passion for fitness. MORE: Improvement in gene therapy carriers key step in hemophilia…
For years, writing about women with hemophilia and other bleeding disorders has meant telling stories of delayed diagnoses, silent pain, and lives shaped by the absence of care. In many ways, it still does. But lately, I think something has shifted. The change has been gradual, and I don’t…
Adults with hemophilia who switched from standard to extended half-life replacement treatment needed fewer infusions, had fewer bleeds per year, and adhered better to their treatment schedules, a Finnish study shows. Switching to extended half-life replacement treatment increased the mean yearly costs by nearly €19,000 (about $22,000) for…
While riding a bus at the first hemophilia conference I attended, I met a young man who had mild hemophilia, just like me. Unlike me, he’d been diagnosed close to birth. Then he shared his factor VIII levels; shockingly, they were higher than mine. I sat in disbelief. I’d…
The first participant was dosed with the investigational therapy marstacimab in a Phase 3 clinical trial — still recruiting eligible patients across the globe — in adolescents and adults with severe hemophilia A or B. Pfizer‘s marstacimab (PF‐06741086) is a human antibody that blocks a…
5 Tips for Healthy Living With Hemophilia
Although hemophilia has no cure, there are ways to manage the disease and avoid bleeding episodes. We’ve put together a list of tips to help patients live well with hemophilia using information from the Mayo Clinic and the Centers for Disease Control and Prevention. MORE: World’s…