Hemophilia and Me
— Jennifer Lynne

The email started with two words: “Good night.” I understood it right away. It’s what a mother writes when the house is finally quiet, but her mind isn’t. Her name is Deiralina Morillo, and she lives in the Dominican Republic. Two of her three children, both daughters, have factor…

Every new hematologist asks the same question: “Who else in your family has it?” For most of my life, the answer was nobody. Nobody with a diagnosis, anyway. I was diagnosed with hemophilia B and von Willebrand disease (VWD) in 1975, at age 10, and I was…

Some medical offices won’t schedule me for a procedure without clearance from my hematologist. Others never even ask. I’m the same patient with the same blood, yet I get completely different answers to the same question: Does my bleeding disorder matter? For my colonoscopy earlier this year, the answer…

The letters start arriving in October. There are plan summaries, notices of benefit changes, and a glossy booklet with a smiling family on the cover. I’m fairly sure that family has never called a specialty pharmacy to ask where their delivery went. For most people, open enrollment is a chore.

For the past week, my inbox has been filling with the same notification: Someone new has registered for “Dismissed.” I read every one. Some names I know, the advocates and friends who’ve sat beside me at conferences for years. Most I don’t. Those are the ones I think about. A…

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…