I went on a date with my husband, Joe, when I was a 19-year-old college freshman. Thirty-eight years later, we’re still together. Like most couples, we had our share of challenges early on, but we made it through. Building a life together at a young age isn’t easy, but…
Discussion
Routine preventive, or prophylactic, treatment reduces bleeding rates in children with severe hemophilia A, regardless of whether prophylaxis is started before or after significant joint bleeds occur, a small Brazilian study found. Data showed that children in the South American nation who started preventive therapy earlier had fewer joint…
Discussion
Recently, my husband, Jared, and I asked our 7-year-old daughter what she knew about being a hemophilia carrier. It wasn’t a serious family meeting. There was no carefully prepared speech. She was stimming and half-playing while we talked, and at times I wasn’t entirely sure how much of the…
Discussion
Upfront treatment with Hemlibra (emicizumab-KXWH) may help reduce hospitalization costs associated with treating bleeds in older adults with acquired hemophilia A (AHA), according to a study. While Hemlibra itself carries a hefty price tag, economic models indicate that using the therapy may help shorten hospital stays and reduce…
Discussion
Many years ago, my family attended the National Bleeding Disorders Foundation’s Bleeding Disorders Conference. My youngest son, Caeleb, was 8 at the time. Due to his hemophilia, he experienced numerous internal bleeding episodes as a child, making it impossible for him to walk long distances. We brought a wheelchair…
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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