Scarcity mindset is the belief that something you rely on will one day run out. It’s most often talked about in the context of money, which resonates with me deeply. As a neurodivergent person married to someone with hemophilia, money has always felt like one of my shields…

The cost of Hemgenix (etranacogene dezaparvovec), a one-time hemophilia B gene therapy, will be covered for patients living in Canada through the country’s public healthcare system. The letter of intent between CSL Behring Canada, Hemgenix’s developer, and the pan-Canadian Pharmaceutical Alliance (pCPA) excludes Quebec. The company said…

Second in a series. Read part one. For most of his life, 21-year-old film student Domenic Catrine assumed weekly infusions were his destiny while living with hemophilia B. By the time he entered college, the rhythm of mixing vials and finding veins had become routine — even if…

Two common themes that appear in my columns are conflict and reconciliation. Once a problem has been resolved and I can reflect on it, I look for insights about how to face the struggles of living with hemophilia. Taking the time to do this has resulted in a change in…

Researchers have developed new versions of clotting factor IX (FIX) that may be used to create personalized treatments for people with hemophilia B — specifically, new replacement therapies designed to help more effectively control bleeding. According to the team, the development of these new FIX versions may serve to create both short-…

First in a series.  Treatment for people living with hemophilia has long meant a lifetime of infusions, careful planning, and constant vigilance. But new therapies are rewriting what’s possible, particularly gene therapy. Domenic Catrine is a charismatic 21-year-old who lives with severe hemophilia B. A junior in college…

It’s been almost 30 years since I first discovered the joy of pregnancy. I can still recall my excitement as I left the doctor’s office, clutching the positive test in my hand. I was eager to surprise my husband, Joe, who was teaching high school choir. I called his…

Last week, I drove two hours to my hemophilia treatment center (HTC) in Tampa, Florida — not just to see my hematologist or get my labs done, but to meet with the physical therapist. The distance was long, but the trip was worth it. My knees have always been…

Nearly all adults with acquired hemophilia A (AHA) safely achieved complete remission with either standard or low doses of rituximab when combined with corticosteroids and cyclophosphamide, a small study shows. Key features of disease remission, including an increase in clotting factor levels and a reduction in inhibitor levels,…