I don’t recall when I met Debbie Murray, but I remember the impression she left on me. Her frustration with the long and challenging journey to a proper diagnosis and effective treatment of her hemophilia was unmistakable. Debbie, 56, resides in Norwood, a village in the northernmost part of…
Hemophilia and Me
— 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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Most people probably don’t think twice about getting dressed. For me, it’s never just about what looks good. It’s about what feels right. Every morning, a quiet calculation happens before I even leave my closet. What am I doing today? How far will I be walking? Will I be sitting…
I have to admit, I was captivated by Hemophilia News Today‘s Facebook page during the final days of December, eagerly following its countdown of the year’s top 10 most-read columns. It was an incredible honor to see that my columns secured eight of those 10 spots. Each one…
One of the most frequent questions I hear is, “How do I find community?” The question resonates deeply with me because, like many others in the bleeding disorders community, I’ve struggled with feeling isolated and misunderstood. Finding a sense of belonging has been a journey, one filled with trial…
December not only marks the end of the year, but it’s also the time for my annual visit to the specialists at my regional hemophilia treatment center (HTC). I live more than two hours away from them, so I appreciate the convenience of telehealth appointments, which are far more…
Last April, I had the privilege of attending the Coalition for Hemophilia B’s annual symposium in Dallas for the first time. It was a transformative experience filled with educational sessions, meaningful social connections, and a shared passion for advancing care within the hemophilia B community. The event brought together…
Dear Santa, This year, I’ve decided to pen a special letter to you — not for myself, but for the global hemophilia community. As the holiday season fills the air with hope and goodwill, I can’t help but reflect on the challenges and dreams of those of us living…
On Nov. 19, I had the privilege of participating in a panel at the Plasma Protein Therapeutics Association’s Plasma Protein Forum in Washington, D.C. Robert F. Sidonio Jr., MD, a pediatric hematologist-oncologist, joined Nikole Scappe-Hagen, the National Bleeding Disorders Foundation’s manager of education, and I to lead…
The Coalition for Hemophilia B held its annual women’s retreat Nov. 14-17 in Alpharetta, Georgia. Initially scheduled for September, the event was postponed due to Hurricane Helene. Despite the delay, the retreat was worth the wait, and I was honored to attend. Since September, I have proudly served as…
I can still feel the sting of frustration as I replay that night at the recent National Conference for Women and Teens with hemophilia in Detroit. The conference was a place of empowerment — a chance to connect, learn, and share experiences with others who live with hemophilia…
This month, I attended One Drop, a “rare bleeding disorders consortium” hosted by Comprehensive Health Education Services (CHES) in Tampa, Florida. The event supported individuals and families with deficiencies of factor I, II, V, VII, X, XI, XIII as well as rare platelet disorders, such as Glanzmann thrombasthenia. Janet Brewer,…
After the flooding from Hurricane Milton totaled my car, I found myself with a whirlwind of emotions and decisions to make. Now, as I embark on the journey of car shopping, I can’t help but notice how much this process mirrors my life with bleeding disorders. Both experiences require patience,…
Wayne Cook is someone you can’t help but love from the moment you meet him. His warmth, passion, and dedication to the hemophilia community have made him an irreplaceable figure. He stars in “On the Shoulders of Giants,” a film by a patient engagement agency called Believe Limited that…
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