Meticulous planning is familiar to many of us in the hemophilia community. I’ve previously discussed how my family accommodates my husband Jared’s severe hemophilia B while planning ahead, whether it’s for travel or our future. For instance, preparing for trips and vacations involves a checklist; we…
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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…
The U.S. Food and Drug Administration (FDA) has granted orphan drug designation to Baudax Bio’s investigational regulatory T-cell therapy TI-168 for the treatment of hemophilia A with inhibitors. Orphan drug status is given to therapies intended to treat rare conditions, defined as those affecting less than 200,000 people in…
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…
Altuviiio (efanesoctocog alfa) has been approved in Japan and Taiwan as a treatment to prevent and control bleeding in people with hemophilia A. The Japanese Ministry of Health, Labor, and Welfare (MHLW) granted Altuviiio marketing authorization on Sept. 25, according to Sanofi, the company that markets…
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…