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…
Discussion
Growing up in Houston, I remember the now-defunct amusement park AstroWorld being a significant part of summer for many people. Its star attraction was the Texas Cyclone, a nearly 100-foot-tall wooden roller coaster whose steep drops and quick turns could make your stomach do somersaults. If…
Discussion
Switching clotting factor products did not cause new inhibitors (neutralizing antibodies that can prevent the treatment from working) to develop in previously treated patients with moderate or severe hemophilia A or B who had no detectable inhibitors at the time of switching. That’s according to data from ATHN…
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.
Get regular updates to your inbox.
