‘Tis that season again — not the one adorned with festive decorations and holiday cheer, but the one with the formidable task of selecting a health insurance plan from the marketplace at healthcare.gov. For those contending with hemophilia or other chronic health conditions, this annual ritual can be…
Hemophilia and Me – a Column by Jennifer Lynne
Last month, I had the privilege and the honor of being one of 60 attendees at the Mild Matters Summit in Tulsa, Oklahoma, organized by the Hemophilia Federation of America (HFA). The summit aimed to empower those with mild bleeding disorders by providing essential information and tools to…
In the realm of hemophilia, I believe the current classification system oversimplifies a far more intricate reality. Severe, moderate, and mild hemophilia are classifications based on the amount of clotting factor present in a person’s blood. Hemophilia is a genetic disorder that impairs the blood’s ability…
Every year, the holiday season appears to arrive earlier, a stark contrast to the days when Christmas wasn’t even contemplated until after Thanksgiving. Now, the hustle and bustle of preparations begin as early as Halloween. This year, the approaching holiday season carries a bittersweet weight for me as it’ll be…
Scrabble, the classic word game that has enthralled generations, is a captivating blend of strategy, vocabulary, and skill. I began playing competitively in 2010. At best, I am a mediocre player, but I love the game and am grateful for my connection to the Scrabble community. For me, Scrabble has…
The recent Rare Blood Disease Summit sponsored by Genentech highlighted a critical perspective pertinent to me: “Mild is the most dangerous word in hemophilia.” I wholeheartedly agree with this statement as a person with mild hemophilia B and von Willebrand disease. Mild hemophilia is distinguished…
In the wake of my mother’s tragic passing in February and the havoc wreaked by Hurricane Ian last year, my living space in Florida has undergone a profound transformation. My mother and I had always depended on a cleaning person to keep our condominium tidy. Those services have been…
Physical therapy (PT) plays a crucial role in the management of hemophilia. While it may seem counterintuitive for people with bleeding disorders to benefit from physical activity, PT is essential for overall joint health and pain management. However, my recent journey tells a slightly different tale. It’s a story…
In 1975, when I was diagnosed with hemophilia B and von Willebrand disease, my dreams of participating in sports were soon shattered. I was barred from dance, cheerleading, and even gym class. My high school’s athletic director also barred me from joining the varsity swim team, concerned…
Last week, I was privileged to attend Genentech‘s Rare Blood Disease Summit at its campus in San Francisco. I’ve been proud to serve on this biotechnology company’s Women in Hemophilia advisory board for the past two years. The invitation-only summit was a small but powerful gathering, bringing together the…
Recent Posts
- I choose to share the power of my story with my blood brothers and sisters
- My son with hemophilia is living his dream — and mine
- China’s first hemophilia B gene therapy now approved in Macao
- My husband still experiences seizures from a childhood brain bleed
- Little interest in gene therapy for many with severe hemophilia: German study