Hemophilia and Me – a Column by Jennifer Lynne

Jennifer 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 graduate of the University of Wisconsin, Madison with a BA in marketing and journalism, and MIT's Birthing of Giants Fellowship Program. A native of Brookfield, Wisconsin, she now resides in sunny Punta Gorda, Florida. Jennifer hopes that her column will raise awareness for hemophilia and other bleeding disorders, especially among women.

Health is not defined by a diagnosis

When I was diagnosed with hemophilia B and von Willebrand disease in the 1970s, I was just 10 years old. Back then, most people didn’t believe girls could have hemophilia. I was told that my “deep blood” didn’t clot properly and sent on my way. Bleeding…

The emotional toll of caring for a child with hemophilia

Recently, I attended the Florida Bleeding Disorders Association’s Women’s Educational Retreat in Hollywood, Florida. I came away with several important takeaways, but one presentation by Lucila Ramirez Donaldson of Genentech truly resonated: caregiver burnout. Many of the women attending were mothers or partners of people living with hemophilia. I’ve…

Improving mental well-being in the hemophilia community

I’ve lived with bleeding disorders all my life. I’ve infused at home, navigated emergency rooms, and advocated for better care for myself and others. But when I was invited to participate in a global hackathon on mental well-being in the hemophilia community, I was struck by something that often…