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…
Discussion
There’s a specific kind of exhaustion that comes from being asked — mid-appointment or on a call with my specialty pharmacy — to recall something my body has already tried to forget. When was your last bleed? What did you infuse, and how much? I used to answer these questions…
Discussion
Nearly a quarter of hemophilia patients aged 50 and older in a prospective screening program at a large UK hemophilia center met criteria for frailty, a study found. All patients with frailty had other health conditions, and nearly 80% were taking five or more regular medications. Hemophilic arthropathy, or…
Discussion
Training for a marathon takes real commitment and determination. Athletes spend weeks or even months getting ready, following a schedule of running and rest days. Crossing the finish line and achieving their goal is incredibly rewarding, as the challenge was their choice. Raising two sons with severe hemophilia A…
Discussion
Last in a series. Read part one. Last week, I asked my oldest son, Julian, what he wished people outside the bleeding disorders community understood about hemophilia. He wished they would not treat him as though he lived in a protective bubble. He wanted independence and trust…
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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