At 32, Ashley Zebley from Arkansas is no stranger to bleeding disorders. I recently interviewed her over the phone. Ashley explained that her father has severe hemophilia B, and both her maternal grandmother and great-grandmother exhibited bleeding problems, although neither was diagnosed with hemophilia. Ashley herself is a…
For those of us living with bleeding disorders, a critical question often looms large: In the event of an emergency, if we rush to the emergency room (ER), will the hospital administer our own factor treatment or will we be forced to use theirs? On the surface, it…
My primary care provider recently retired and was replaced by a doctor new to my area. As I prepared for our first meeting, I reflected on how I usually approach my bleeding disorders. Typically, I don’t even mention hemophilia to a primary care doctor. I mutter terms like “bleeding…
What do all the people with bleeding disorders I’ve interviewed for this column have in common? Each of them has a story about certain doctors not listening to them. I have a story about that, too. But first, I want to acknowledge that I now receive exceptional care from…
The 2024 Paris Olympics have been a mesmerizing spectacle of human achievement and have captivated my attention for more hours than I care to admit. Sacrificing sleep to witness the gymnastics finals live was a decision I’ll never regret. The countdown to the end of the Olympics is already painful.
I met Jennifer Hastie last year at the Hemophilia Federation of America’s Mild Matters Summit in Tulsa, Oklahoma. Along with two of her three daughters, Jennifer has von Willebrand disease (VWD) type 2B, a rare variant. We share more than just a name: Jennifer is also 58…
Priscilla Oren, a member of the hemophilia community, recently shared her family’s history with me. Her son was a victim of the “hemophilia holocaust” in the 1980s. During that time, many people with hemophilia contracted HIV/AIDS and hepatitis from the factor products used to treat their bleeding…
I spent part of a day this week trapped in my condo’s elevator. Since Hurricane Ian hit my town of Punta Gorda, Florida, in September 2022, the elevator has been temperamental, frequently trapping people inside. With high humidity and the outdoor temperature at 98 F, I was hot inside…
Feet and ankle problems are common for people with bleeding disorders, including hemophilia B and von Willebrand disease. As someone living with these conditions, I’m no stranger to these challenges. I recall a trip to Disney World when I decided to wear a pair of Birkenstocks for…
The past two weeks have been a whirlwind of activity for me, highlighted by two significant events. First, I attended an event in Washington, D.C., called “Voices of Hemophilia,” which was sponsored by the biotech company CSL Behring. This small but powerful gathering brought together eight leading voices from…
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