“Don’t let anyone cut into you without talking to your hematologist first.” That’s what my hematologist told me decades ago, and I’ve never forgotten it. It’s advice that may have saved my life more than once. For people living with hemophilia, von Willebrand disease, or rare factor…

Every week, I lead the pastoral prayer at church. It’s a moment to share what brings us joy and what weighs on our hearts as a congregation and a community. I always pray for the unhoused, the hungry, the grieving, and our country. But there’s one group I often mention…

A single dose of the gene therapy Roctavian (valoctocogene roxaparvovec-rvox) continues to prevent bleeds and the need for preventive treatment (prophylaxis) for up to five years in most treated men with severe hemophilia A, according to final Phase 3 trial results. Activity of factor VIII (FVIII), the clotting…

Women like me often wonder how the hemophilia community has overlooked us for so long. The stories of women labeled as mere “carriers” — despite experiencing life-threatening bleeding episodes — are endless. For decades, we’ve lived with symptoms that disrupt our lives, yet we were dismissed, misdiagnosed, or told…

When you’re a parent to a child newly diagnosed with a bleeding disorder, the immediate concern is for your child. What do I do next? Will they be OK? What will life look like from now on? You find yourself searching for answers and developing a support system…

I’m a 25-year-old “PWD” (person with disabilities), and I’m not a baby bird anymore. It’s time for me to fly on my own, be independent, and take care of myself. Recently, I had a string of bleeding episodes. It was difficult for me to put a smile on my face.

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…

When I tell people I’m married to someone with hemophilia, I get different reactions. Some people are genuinely curious and want to know more about my husband’s condition. They’ll ask several questions about the hows and whys of his bleeds, and are often curious about treatment. On the other hand,…

The cost of the one-time hemophilia B gene therapy Hemgenix (etranacogene dezaparvovec) will now be covered for eligible patients in Germany through the country’s public healthcare system. This comes through a reimbursement price agreement between developer CSL Behring and GKV-Spitzenverband, the German National Association of Statutory Health…

As a chaplain, I am privileged to stand at the bedside of someone who is dying. Often, few words are exchanged. I know it is my presence there that matters most. When people learn that I work in hospice, they often say, “Oh, my goodness, that must be hard work.