Hemophilia and Me
— Jennifer Lynne

Three years. That’s how long I put off a colonoscopy I’d been told not to put off. This wasn’t a first screening I could shrug off. At my previous colonoscopy, doctors found and removed a precancerous polyp. The instruction was simple: Come back in five years for a follow-up. And…

When I was diagnosed with hemophilia decades ago, I was 10 years old, and nobody asked me what I wanted. That isn’t a complaint about my doctors. There was nothing to ask. There was hemophilia B and von Willebrand disease, and one way to treat them. You…

There’s a specific kind of exhaustion that comes from being asked — mid-appointment or on a call with my specialty pharmacy — to recall something my body has already tried to forget. When was your last bleed? What did you infuse, and how much? I used to answer these questions…

Hurricane Ian directly hit my condo in 2022. My mother and I evacuated to Orlando, Florida, and couldn’t return for weeks. It was long enough that “recovery” became its own kind of routine — a slow, stubborn process that I eventually made my way through. I know how to do…

My Peloton bike doesn’t go anywhere. That’s the whole point. It sits in my bedroom, stationary, pedals turning against resistance I set myself, wheels spinning in place while the rest of the world stays exactly where it is. No cross-country route, no open road, no wind at my back. Just…

I was scrolling Facebook last week when a post stopped me cold. It was from Ashley Hall, a mom I’ve come to know in this community. She has two boys with hemophilia A, one of whom, Maverick, also has an inhibitor. An inhibitor develops when the immune system…

There’s a moment I’ve heard described so many times that it feels like a shared memory. A woman finally learns the name of the bleeding disorder she’s carried for so many years without answers. Perhaps it’s von Willebrand disease (VWD), or maybe it’s hemophilia. Then, the doctor’s appointment…

Note: This column describes the author’s experiences with BeneFix (coagulation factor IX). Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy. I expected factor to help a bleed. I didn’t expect it to change what my back could do. For months,…

Most mornings, before the day can get its hands on me, I do exercises for my spine. They are not impressive. No one would film them. They are slow, deliberate movements on a mat, the kind of thing that looks like nothing and costs more than it looks. Bracing. Holding.

For most of my life, “tired” was the only word I had, and it was never enough. I’d say it to doctors the way you’d mention the weather — a fact so ordinary it wasn’t worth writing down. And mostly, it wasn’t. Tired was normal. Heavy periods were normal. Being…

When I was in high school, I wasn’t just excused from gym class; I was prohibited from participating in every sport except swimming. While my classmates learned volleyball, basketball, and track, I sat on the sidelines because my bleeding disorders made physical activity too risky. At the time, I accepted…