When I was diagnosed with hemophilia decades ago, I was 10 years old, and nobody asked me what I wanted. That isn’t a complaint about my doctors. There was nothing to ask. There was hemophilia B and von Willebrand disease, and one way to treat them. You…
Discussion
Heavy periods in teenage girls should prompt further evaluation for an underlying bleeding disorder, such as hemophilia, rather than simply being considered a normal part of adolescence, according to a call to action from an international group of experts. Heavy menstrual bleeding, or HMB, can sometimes be the first — or…
Discussion
I never saw myself as an athlete. In middle school, I played volleyball, sat on the bench for most of basketball season, and played softball in the summer. As an adult, I tried Curves, Jazzercise, some yoga, and went to the gym. Then, in 2016, I made a choice that…
Discussion
A gene therapy that delivers instructions to produce a longer-lasting version of the clotting protein missing or deficient in hemophilia B may improve treatment effectiveness while maintaining a favorable safety profile, a study in mice suggests. Researchers in Belgium, working in a lab, combined the genetic instructions for a…
Discussion
I thrive as the wife of someone with severe hemophilia B. That does not mean hemophilia has made our marriage easy. It has brought fear, limitations, and responsibilities into our lives. It has also deepened the trust and communication between my husband and me. Over time, I have…
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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