Hemophilia and Me – a Column by Jennifer Lynne

Gene therapy has long been touted as a revolutionary hope for people with hemophilia B, promising a one-time treatment to drastically reduce — or even eliminate — the need for frequent infusions. Yet that hope has hit another roadblock. Pfizer announced last week that it’s halting development of…

When people hear the word “hemophilia,” they often picture severe bleeding, bruising, or swollen joints. Those are the visible symptoms, the ones doctors, nurses, and even family members understand. But living with a bleeding disorder is so much more than what meets the eye. There are symptoms we…

Women like me often wonder how the hemophilia community has overlooked us for so long. The stories of women labeled as mere “carriers” — despite experiencing life-threatening bleeding episodes — are endless. For decades, we’ve lived with symptoms that disrupt our lives, yet we were dismissed, misdiagnosed, or told…

Since my diagnosis at age 10, I’ve always received treatment at federally funded hemophilia treatment centers (HTCs) — except for a brief period when my insurance didn’t cover my hematologist. Most hematologists don’t specialize in bleeding disorders, which can be complex to diagnose and treat. Without the expert care provided…

Note: This column describes the author’s own experiences with getting three vaccines at once. Not everyone will have the same response to treatment.   I consider myself quite adept at managing my bleeding disorders, von Willebrand disease and hemophilia B. Decades of experience have taught me how to…

Emergency preparedness is a broad and crucial topic, especially for those of us in the bleeding disorders community. With natural disasters becoming more frequent and severe across the U.S. — think of the Los Angeles wildfires — planning ahead is more important than ever. As a Florida resident, I’ve experienced…

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…

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…