Hemophilia and Me – a Column by Jennifer Lynne

First in a series. Some people in the bleeding disorders community seem like they’re larger than life — not because they seek attention, but because their lives intersect with so many pivotal moments in our shared history. Lee Hall is one of those people. I know Hall through his advocacy…

For decades, people with hemophilia have benefited from remarkable advances in treatment. Meanwhile, many people living with von Willebrand disease (VWD) have continued relying on therapies developed more than 20 years ago. Too often, VWD itself has been misunderstood or minimized. Even getting diagnosed can be complicated.

January is supposed to feel like a reset — a clean slate and a fresh start. But for people with bleeding disorders, it often feels like the opposite. Prior authorizations expire. Deductibles reset. Insurance coverage shifts. Nothing about my medical reality changes, but suddenly, everything about access to care feels…

Letting a doctor go can feel like a radical act, especially when, like me, you live with a lifelong bleeding disorder. Many of us are taught, implicitly or explicitly, to be grateful for any care we receive, to avoid rocking the boat, and to trust that the person with the…

Last year was a year of conferences for me — at least 10 by my count. It still amazes me that, in the hemophilia community, thousands of individuals and families are able to travel and attend these events at little or no cost, thanks to the support of event…

I wasn’t doing anything unusual when it happened. I wasn’t exercising, rushing around, or kicking someone. I was simply walking around my house when I felt a sudden, sharp pain in the ball of my foot. Within seconds, it began to swell. A bruise appeared, purple, unmistakable, and completely uninvited.

In a previous column, I shared Tara Blakely’s journey to earning a black belt — an accomplishment nearly 30 years in the making, interrupted by life, motherhood, undiagnosed hemophilia, and everything in between. Impressive, certainly. I was equally impressed by her 110-pound weight loss. I’ve struggled with my…

When fellow columnist G Shellye Horowitz asked me to travel to Houston to support her through surgery for superior mesenteric artery syndrome, I didn’t hesitate. I knew I needed to be there. She told me I was the perfect choice because I understand hemophilia, its treatment,…

For most people, taekwondo is about discipline, confidence, and the long path toward a black belt. For Tara Blakely, it became something else entirely — a story of interruptions, detours, motherhood, misdiagnosed bleeding, and the quiet strength required to begin again when life keeps pulling you away. Tara began her…

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…