The Hemophilia Federation of America recently hosted its annual symposium in Indianapolis. Despite my desire to attend, circumstances didn’t align for me this year. One of the event’s highlights was the debut of digital content agency Believe Limited‘s latest cinematic offering, “On the Shoulders of Giants,” now…
Hemophilia and Me – a Column by Jennifer Lynne
Several members of my family are diehard Purdue University basketball fans. This year was particularly exciting for them due to Purdue’s performance in the recent NCAA basketball tournament. During a gathering at their house on Easter Sunday, which included watching an important March Madness game, I gained insight…
As someone who typically sees the glass half full, I’ve found myself to be the go-to adviser for my nephews, especially when they’re having a full-blown panic attack, which unfortunately seem to be increasingly common among young people, at least in my family. Whether they’re venting about their jobs or…
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…
Recent Posts
- Conference for the rarest of bleeding disorders brings a sense of community
- Quick action could prevent fatal brain bleeds for children in poor nations
- For hemophilia parents, letting go of control is hard, but necessary
- A recipe of support for parents new to a hemophilia diagnosis
- New CAAR-T therapy may eliminate hemophilia A treatment blockers: Study