For years, writing about women with hemophilia and other bleeding disorders has meant telling stories of delayed diagnoses, silent pain, and lives shaped by the absence of care. In many ways, it still does. But lately, I think something has shifted. The change has been gradual, and I don’t…
Hemophilia and Me – a Column by Jennifer Lynne
When you live with a bleeding disorder, you get used to explaining yourself. You learn to walk into an emergency room ready with a treatment letter and a mental script of your medical history. You learn to minimize pain, explain bruises, fight for treatment, and reassure medical professionals that, yes,…
I first met Connie Montgomery at the Hope Conference in Orlando, Florida, one of those rare moments when you instantly recognize a kindred spirit. Over lunch, we fell into deep conversation about women with bleeding disorders, the challenges we face, and the determination it takes to keep…
The energy in the room was unmistakable. Before the official start of the Hope Conference in Orlando, Florida, last week, a group of women had been invited for a special preconference event — a day set aside just for us. It was marked by laughter, the sharing of stories,…
After every storm, there’s a moment when you think the hard part is over. The winds calm, the skies clear, and you take that first deep breath of relief — only to realize the real work is just beginning: the cleanup, the repairs, and waiting for things to return to…
During the National Conference for Women with Hemophilia and Rare Factor Deficiencies, held Oct. 3-5 in Detroit, I joined a standing-room-only session titled “More Than One Story: Exploring Joint Health in Hemophilia, Hypermobility, and Beyond.” It was refreshing to see hypermobility on the agenda — a topic that resonates…
Last in a series. Read parts one and two. For 21-year-old Domenic Catrine, hemophilia B once dictated every part of life, from wearing a helmet during childhood playtime to college routines shaped by weekly factor infusions. Then he underwent gene therapy during his sophomore year in…
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…
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…
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…
