I entered my 3-month-old son’s room and stared at him as he peacefully slept in his cradle. Streetlights shined through the window into the darkened room. I glanced out at a serene view that reminded me that everyone uses nighttime to rest. I turned to my baby boy, unsure of…

As my beloved hematologist pointed out during my last hemophilia clinic appointment, my health situation is rare. I have at least two identified bleeding disorders: von Willebrand disease and hemophilia B. I’ve met others along my journey who have two disorders, too, but the situation…

I’ve lived with bleeding disorders all my life. I’ve infused at home, navigated emergency rooms, and advocated for better care for myself and others. But when I was invited to participate in a global hackathon on mental well-being in the hemophilia community, I was struck by something that often…

Nearly two-thirds of children with severe hemophilia A on preventive, or prophylactic, treatment with once-weekly Altuviiio (efanesoctocog alfa) in the yearlong XTEND-Kids study were free of bleeding episodes needing treatment. More than 80% in this Phase 3 clinical trial also were free of spontaneous bleedings and joint bleeds needing…

I have von Willebrand disease (VWD) and hemophilia B, a less common form of hemophilia that arises when a blood-clotting protein called factor IX is missing or deficient. Hemophilia is often thought of as a condition that only affects men, but women can and do have it, too.

When I was younger, my parents would tell me to date a particular “ideal” man. This man need not be good looking, but he’d better be a good guy — no questionable values, capable of getting along with my family — the perfect guy in the eyes of every Filipino…

The 1980s were my favorite decade. I was in high school, and my music was the most important thing in my life. I practiced hard for auditions in the hopes of making the Texas All-State Band. Life was good. My perception of that decade changed after my first…

I live in the small town of Punta Gorda, Florida. Though I have hemophilia B and von Willebrand disease, I don’t know anyone here or in the surrounding Charlotte County with a bleeding disorder. While living in such a community can present challenges when dealing with…

Life with hemophilia can be challenging but there are ways that you can manage the disease to ensure your child leads as normal a life as possible. To help you navigate your child’s illness and help prevent bleeds, we’ve put together a list of tips. MORE: How to prepare for your child’s…

In this series of Bloodstream podcasts from Bloodstream Media and shared by Bloodfeed, host Patrick James Lynch talks to various people in the bleeding disorder community including hematologists, patients, caregivers and advocates about all aspects of living and caring for people with hemophilia and other bleeding disorders.