Living with hemophilia B and von Willebrand disease means getting used to things that most people would consider unusual. Bruises appear without explanation. Minor injuries take longer to heal. A routine dental visit requires more planning than most people would ever imagine. And sometimes, the body sends…
Discussion
Not long after I started working at the Hemophilia Federation of America (HFA), the organization hosted a congressional reception to help raise awareness about bleeding disorders. The bleeding disorders community must maintain its visibility among government decision-makers who help address important issues, such as ensuring our access to the…
Many boys and young men with hemophilia regularly participate in sports. However, doing so frequently — particularly three or more times a week — may raise the risk of sports-related bleeding, especially during early adolescence, a Japanese study reports. “Regardless of sports type, most bleeding episodes happened during junior…
Discussion
My youngest son, Caeleb, faced many health challenges with hemophilia during his early years. Throughout early elementary school, he missed more than 50 days a year. He’d go to school for a few days, and then a spontaneous internal joint bleed would take him out of school for…
A single infusion of Beqvez (fidanacogene elaparvovec-dzkt), a now-discontinued gene therapy for hemophilia B, led to sustained production of factor IX (FIX) — the clotting protein missing in people with the condition — for up to six years, reducing bleeding episodes and eliminating the need for routine preventive…
Becoming educated and informed about hemophilia is a good first step. Here you’ll find general information about the disease, including diagnosis, symptoms, and causes.
It helps to know others have been where you are now. Here’s a collection of our columnists’ words of wisdom to help you along on your hemophilia journey.
There is no cure for hemophilia yet, but here you can find more information about current therapeutic approaches, as well as experimental treatments that are in the pipeline.
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