Embracing the start of 2024, I reflect on the friendships I’ve made within the hemophilia community over the past year. As a woman navigating the complexities of hemophilia B and von Willebrand disease, these connections have become a source of strength and solidarity for me. Each person…
Hemophilia and Me – a Column by Jennifer Lynne
Soon, I’ll leave sunny Florida for the northern tundra of Madison, Wisconsin, and Schaumburg, Illinois, to be with my family for Christmas. As I prepare to spend time with my loved ones, I can’t help but appreciate the significance of this trip: It marks my first Christmas journey without…
I eagerly anticipate a future where inherited bleeding disorders can be conclusively diagnosed, with absolute certainty, through genetic tests. Currently, conditions such as von Willebrand disease (VWD) pose diagnostic challenges, frequently requiring multiple tests over extended periods for confirmation. Although my initial diagnosis came after a single test,…
‘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…
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…
