Hemophilia and Me
— Jennifer Lynne

Main graphic for Hemophilia and Me, a column by Jennifer Lynne.

Jennifer Lynne is an entrepreneur specializing in digital marketing, a self-professed computer nerd, and a nationally competitive Scrabble player. Jennifer has strong ties to the bleeding disorder community; she was diagnosed in 1975 with hemophilia B and Von Willebrand’s disease at age 10. She is a University of Wisconsin, Madison graduate with a BA in marketing and journalism, and was in MIT’s Birthing of Giants Fellowship Program. A native of Brookfield, Wisconsin, she now resides in sunny Punta Gorda, Florida. Jennifer hopes her column will raise awareness for hemophilia and other bleeding disorders, especially among women.

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The generosity of plasma donors has a profound impact on patients like me

There are moments when I’m reminded just how much I depend on something most people rarely think about. I live with von Willebrand disease, and my treatment depends on Humate-P (antihemophilic factor/von Willebrand factor complex [human]), a plasma-derived therapy. This medication is more than just a vial;…

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Embracing the strange signals that come with a bleeding disorder

Living with hemophilia B and von Willebrand disease means getting used to things that most people would consider unusual. Bruises appear without explanation. Minor injuries take longer to heal. A routine dental visit requires more planning than most people would ever imagine. And sometimes, the body sends…

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Conference for the rarest of bleeding disorders brings a sense of community

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…

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Growing up before treatments for hemophilia were safe, part 3

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…

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Growing up before treatments for hemophilia were safe, part 2

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…

Columns

Growing up before treatments for hemophilia were safe, part 1

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…

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Why progress in von Willebrand disease treatment finally feels real

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.

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January’s reset means the system restarts, but our bodies do not

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…


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