A global survey of more than 2,700 hemophilia patients, caregivers, and healthcare providers, which aimed to uncover the daily challenges of living with the rare blood disorder or caring for those who do, found that many patients regularly hide their symptoms — including from their doctors. “More than…
Hemophilia, a disorder characterized by excessive bleeding, is caused by the lack of activity of certain clotting factors, which are proteins that are needed to form blood clots.
I’m grieving for my youngest son, Caeleb, a high school senior. Caeleb’s academic pursuits haven’t been successful, according to the world. Society revels in straight A’s, being in the top 10% of a graduating class, and receiving full-ride scholarships to college. If a student isn’t meeting these expectations and doesn’t…
Treatment with platelets stripped of their natural sugar molecule coating helped to prevent inhibitors, or neutralizing antibodies, from forming against clotting factor VIII (FVIII) replacement therapy in a mouse model of hemophilia A, a study reported. Platelets promote blood clotting, and they are generally thought to boost inflammation…
Idelvion (albutrepenonacog alfa) is an approved factor IX (FIX) replacement therapy for the prevention and treatment of bleeds, including those occurring during surgery, in adults and children with hemophilia B.
Adynovate (antihemophilic factor, rurioctocog alfa pegol), sold as Adynovi in Europe, is a recombinant (lab-made) clotting factor VIII (FVIII) concentrate given as an intravenous (into-the-vein) injection to prevent and control bleeding in children and adults with hemophilia A.
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…
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…
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