The first hemophilia B patient in Germany has received the gene therapy Hemgenix (etranacogene dezaparvovec), according to CSL Behring, the therapy’s developer. “The treatment of the first patient in Germany with Hemgenix marks a milestone in hemophilia B therapy,” Christian Wieszner, managing director of CSL Behring Germany,…

Sometimes I forget I have hemophilia. I know that sounds silly, particularly after years of struggle to obtain a diagnosis, yet it’s true. This forgetting is great when I’m healthy and have no issues. There are times, however, when it’s imperative that I remember I have hemophilia. Sometimes I…

I recently came across a social media post that hit home. It began: “Never judge someone with a chronic illness if they …” and went on to list things like skipping meds, eating foods that might trigger symptoms, resting all day, or even doing something that looks “wrong”…

Last in a series. Read parts one and two. After our oldest son, Julian, was born and we took him home, the first six months went smoothly. His hemophilia diagnosis came up occasionally, but it didn’t directly affect our quality of life. We later learned that those early…

In people with hemophilia A, certain immune markers in the blood may help predict patient responses to immune tolerance induction (ITI) — a treatment regimen used for individuals who develop inhibitors after factor replacement therapy — according to a new study by researchers in Brazil. Inhibitors, neutralizing antibodies…

Preventive treatment with Hympavzi (marstacimab-hncq) can effectively reduce bleeding rates in people with hemophilia A or B who have inhibitors, or antibodies against standard replacement therapies, according to top-line data from a Phase 3 clinical trial. Hympavzi’s developer Pfizer said it’s now planning to discuss these…

Second in a series. Read part one. The birth of our oldest son, Julian, was a milestone event in our lives. After all the excitement and drama of that stormy June evening in 1996, things calmed down for the rest of the night. My wife, Cazandra, rested in her…

Three weeks after my hysterectomy, I was sitting in a hospital emergency room pouring blood. Losing that much blood and not understanding why was scary. While waiting to be seen by a doctor, I posted on social media because the idea of people praying for me was comforting, even though…

Growing up, I was coddled — constantly protected from the world, from pain, and often, from myself. My parents loved me deeply, but understandably, fear sometimes ran the show. Decisions were made for me. I wasn’t encouraged to speak up, take risks, or manage my condition. They meant well. But…