Hemophilia takes a toll not just on the life of the individual who struggles with the disease, but also on the family unit. It is not easy to have a genetic disorder as a life focal point that does not go away. When a woman has hemophilia, it…
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Joint changes detected by magnetic resonance imaging (MRI), and often are missed on radiographs, are a strong predictor of damaging bleeds over the next five years in joints of people with hemophilia, a study suggests. A 10-fold increase in the five-year risk of joint bleeds was found by…
Patient dosing has been completed in a registrational Phase 3 clinical trial in China testing BBM-H901, Belief BioMed‘s (BBM)’s investigational gene therapy for hemophilia B, the company announced. BBM-H901 is designed to restore the production of factor IX (FIX) — the blood-clotting protein that is faulty or missing…
I eagerly anticipate a future where inherited bleeding disorders can be conclusively diagnosed, with absolute certainty, through genetic tests. Currently, conditions such as von Willebrand disease (VWD) pose diagnostic challenges, frequently requiring multiple tests over extended periods for confirmation. Although my initial diagnosis came after a single test,…
The Hemophilia Federation of America (HFA) is now offering mental health and well-being courses, through its Learning Central program, to support people with hemophilia, as well as their caregivers. Topic areas include anxiety, suicide, trauma, pain management, depression, and grief. Offered resources in the program’s library can be…
In the Netherlands, children and adults with hemophilia participate in sports as much or more than people from the general population, according to a study. The findings also indicated that disease severity affected sports participation only in adults, and that children with hemophilia were more willing to participate in…
March is Bleeding Disorders Awareness Month, when patients and families who live with bleeding disorders post facts on social media and share their stories to educate those with little understanding of how a chronic illness affects daily life. I have participated in numerous events to educate the community, and this…
The events of last weekend proved chaotic and unexpected. On our way to see a movie, my family was involved in an automobile accident that left my vehicle inoperable. The person who caused the collision sped away, leaving us alone and frightened. I called 911, and a fire truck, ambulance,…
I bought a new mattress and anxiously awaited its delivery. At last, the furniture truck rumbled in the cul-de-sac and stopped in my driveway. Seeing my new, plush, dreamy mattress rolled up like a carpet and crinkling inside its plastic wrap was odd, but I knew it’d soon offer a…
BioMatrix Specialty Pharmacy has announced the six recipients of this year’s Memorial Scholarship Program, with each receiving $1,000 to support their higher education. The program, a partnership with the Hemophilia Federation of America (HFA), honors the memory of people who uniquely impacted the bleeding disorders community…