Hemophilia and Me
— Jennifer Lynne

Priscilla Oren, a member of the hemophilia community, recently shared her family’s history with me. Her son was a victim of the “hemophilia holocaust” in the 1980s. During that time, many people with hemophilia contracted HIV/AIDS and hepatitis from the factor products used to treat their bleeding…

I spent part of a day this week trapped in my condo’s elevator. Since Hurricane Ian hit my town of Punta Gorda, Florida, in September 2022, the elevator has been temperamental, frequently trapping people inside. With high humidity and the outdoor temperature at 98 F, I was hot inside…

Feet and ankle problems are common for people with bleeding disorders, including hemophilia B and von Willebrand disease. As someone living with these conditions, I’m no stranger to these challenges. I recall a trip to Disney World when I decided to wear a pair of Birkenstocks for…

The past two weeks have been a whirlwind of activity for me, highlighted by two significant events. First, I attended an event in Washington, D.C., called “Voices of Hemophilia,” which was sponsored by the biotech company CSL Behring. This small but powerful gathering brought together eight leading voices from…

Saying no has always been a challenge for me. I tend to overcommit, take on too many tasks, and then feel resentful toward the people or activities I didn’t want to engage with in the first place. For instance, I’m now on my condo board because I couldn’t say no…

I first met Kim Phelan, chief operating officer of The Coalition for Hemophilia B, in person at a recent symposium in Dallas. From the moment we spoke, I was in awe of her. Despite the hundreds of attendees, she took the time to engage with me personally.

This Father’s Day, as we celebrate the role of fathers in our lives, I can think of no one more deserving of recognition in our bleeding disorders community than Iván Girón. At Genentech’s Rare Blood Disease Summit in San Francisco last year, I was immediately drawn to Iván…

I cannot stress enough how profoundly heavy menstrual bleeding can impact everyday life. Imagine needing to find a bathroom nearly every hour, seven days a week. It can make certain career choices extremely challenging and disrupt daily activities, including school and athletics. When I was young, I didn’t realize my…

Iron deficiency has been a hot topic at the online hemophilia summits I’ve attended recently, and it’s encouraging to see this important issue being addressed. Hemophilia doesn’t directly cause iron deficiency, but heavy menstrual bleeding can lead to iron loss. Women with hemophilia who experience heavy menstrual…

I live in the small town of Punta Gorda, Florida. Though I have hemophilia B and von Willebrand disease, I don’t know anyone here or in the surrounding Charlotte County with a bleeding disorder. While living in such a community can present challenges when dealing with…

Speaking at the Hemophilia Federation of America’s Mild Matters Summit last year, former Hemophilia News Today columnist Shellye Horowitz shared how her treatment plan changed after she researched the genetic variant that caused her hemophilia A. Although she’s classified as “mild,” her factor treatment…

Note: This column shares a woman’s self-described experience administering herself factor despite a doctor’s advice. Consult your doctor before starting or stopping any therapy. For the first time, I attended the Coalition for Hemophilia B’s annual symposium, held late last month in Dallas. It was an enriching experience where…