Hemophilia and Me – a Column by Jennifer Lynne

Last week in Tampa, Florida, I attended the CHES Foundation’s One Drop consortium, the largest national conference dedicated exclusively to people living with ultra-rare bleeding disorders. The program focuses on conditions that often lack the resources, research attention, and community networks that are available to those with more common…

Last in a series. Read parts one and two. In the previous columns of this series, hemophilia awareness advocate Lee Hall shared his memories of a childhood shaped by hospitalizations and the painful reality of early hemophilia treatment, followed by the devastating era from the 1970s…

Second in a series. Read part one. In my last column, hemophilia awareness advocate Lee Hall shared memories of a childhood shaped by hospital stays, difficult infusions, and the early days of hemophilia treatment. For many readers, those experiences may already feel unimaginable compared with the care…

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…