Hemophilia and Me – a Column by Jennifer Lynne

Navigating social media for information about hemophilia and other health issues can produce mixed results, but amid the noise are shining beacons of knowledge and support. In honor of Bleeding Disorders Awareness Month, which is now coming to an end, the following are five exceptional social media accounts…

Note: This column describes the author’s own experiences with Mounjaro (tirzepatide). Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy. In a previous column, I shared my journey of embarking on a weight loss program using the type…

Last year, I had the privilege of connecting with Jeanette Jones, a former education manager at the Hemophilia Federation of America. During our conversation, she graciously guided me through a period tracker toolkit that she played a pivotal role in developing. Jeanette is a passionate advocate for…

During the December holiday season, while visiting family in Illinois and Wisconsin, I had an unexpected dental emergency: A crown cracked and fell out. Unfortunately, complications arose when I contracted COVID-19, causing delays in addressing the issue. When I finally managed to schedule an appointment for the crown…

In a recent blog post on the Hemophilia Federation of America’s (HFA) website, HFA board member Joe Markowitz, 73, who has hemophilia, shared his perspective. He believes that life today is favorable for those with hemophilia, and he encouraged young families to overlook what he perceives as the…

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…