Hemophilia and Me – a Column by Jennifer Lynne

It’s that time of year again when brackets are busted, Cinderella stories happen, and basketball fans everywhere are glued to the television for the madness of March. The NCAA basketball tournament is full of buzzer-beaters, heartbreak, and jaw-dropping comebacks. And oddly enough, for many of us living with bleeding disorders,…

There have been many moments in my life when I’ve blatantly thought, “If I die bleeding, I die bleeding.” Of course, I didn’t want to think that, but I felt like I had no other choice. When doctors brush off your bleeding, when you’re told, “You’re “just anemic,” when…

Beyond medical complexities, bleeding disorders illuminate inspiring stories of resilience, courage, and community strength. When we openly share our experiences, we educate others, combat stigma, and promote inclusion. Bleeding Disorders Awareness Month in March is an essential opportunity to highlight the realities faced by those living with hemophilia,…

Note: This column describes the author’s own experiences with surgical procedures. Not everyone will have the same response to these operations. Consult your doctor about the potential risks and benefits of any procedure you’re considering. As I get older, the thought of needing any kind of surgery scares the…

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…