In 1975, when I was diagnosed with hemophilia B and von Willebrand disease, my dreams of participating in sports were soon shattered. I was barred from dance, cheerleading, and even gym class. My high school’s athletic director also barred me from joining the varsity swim team, concerned…
Impairments in joint health are associated with certain functional deficits in the lower limbs among people with mild hemophilia, a study reports. A combination of aging, pain, and joint damage had a significant influence on patients’ performance in tests of muscle power, while aging alone explained most variation in…
While searching for content ideas for a client, I stumbled on an Instagram post that immediately caught my attention. “Human beings are seasonal,” the post stated — more or less, as I can’t recall the exact wording. But I’ve managed to internalize three key points on the subject: Life has…
Hemlibra (emicizumab-KXWH) is an antibody-based therapy used to prevent or reduce bleeds in hemophilia A patients, with or without factor VIII (FVIII) inhibitors. It is given as an under-the-skin, or subcutaneous, injection.
Alprolix (eftrenonacog alfa) is an approved therapy that is used to prevent and control bleeds, including those occurring during surgery, in adults and children with hemophilia B.
My husband and I typically fill certain roles in our home. I do most of the cooking; he takes out the trash and handles automotive maintenance (by going to the appropriate mechanic). But after 30-plus years together, we can seamlessly trade roles and share in all the responsibilities. When…
In the hustle and bustle of daily life, we often overlook the extraordinary within the ordinary. My husband, Jared, has hemophilia, and we’ve found that living with the bleeding disorder has a way of sprinkling our lives with one-of-a-kind situations that might seem mundane to us but are…
Treatment with Idelvion (albutrepenonacog alfa) was effective in a real-world setting at controlling bleeds for five people with hemophilia B at a center in Spain. That’s according to data reported in the study, “Benefits of rIX-FP prophylaxis in patients with Haemophilia B: real-world evidence from…
Nuwiq (simoctocog alfa) is an approved therapy that works to prevent and control bleeding episodes, including those occurring during surgery, in adults and children with hemophilia A.
My oldest son, Julian, is preparing for a big audition. He hopes the casting director will hear his submission and ask him to go to New York for a final, on-site callback. If the powers that be select him, he’ll perform in his first national touring production. My son displayed…
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