Hemophilia and Me – a Column by Jennifer Lynne

Rare Disease Day, observed this year on Feb. 29, serves as a poignant reminder of the challenges facing those who live with uncommon medical conditions. According to the event’s website, a rare disease is defined as one that affects fewer than 1 in 2,000 individuals. Among these conditions…

In the 1970s and ’80s, treating my von Willebrand disease and hemophilia B often involved a regimen that included fresh frozen plasma, platelets, and cryoprecipitate. Cryoprecipitate, a blood component derived from frozen plasma, contains vital clotting factors such as fibrinogen, factor VIII, von Willebrand factor, and factor…

A person like me, with bleeding disorders like hemophilia and von Willebrand disease, can incur staggering expenses. The cost of medications alone can soar into the thousands of dollars per dose, and multiple doses are frequently required to manage bleeding episodes effectively. In 2019, I faced the…

On a recent call with others in the bleeding disorders community, a poignant concern emerged: the fear that the harrowing history of hemophilia‘s dark days may be slipping from our collective memory. The “hemophilia holocaust” remains a haunting chapter in medical history, etching an indelible mark on…

As my beloved hematologist pointed out during my last hemophilia clinic appointment, my health situation is rare. I have at least two identified bleeding disorders: von Willebrand disease and hemophilia B. I’ve met others along my journey who have two disorders, too, but the situation…

Last year, at the Hemophilia Federation of America‘s Mild Matters Summit in Oklahoma, I attended a session led by physical therapist Nancy Durben that left a lasting impact. Durben guided a group on a leisurely walk, urging us to savor the experience — to relish the sound…

The new year isn’t exactly kicking off on a high note for me. At the end of last year, I headed to Schaumburg, Illinois, to spend Christmas with my family only for my dental crown to crack in half during the trip and decide to make…

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…

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,…