Hemophilia and Me – a Column by Jennifer Lynne

A simple tonsillectomy led to my eventual diagnosis of hemophilia B and von Willebrand disease. Without a family history, a bleeding disorder wasn’t on my family’s or pediatrician’s radar. I had to almost bleed to death for a bleeding disorder to be suspected. Terror of the tonsils The…

What happens when a symptomatic hemophilia carrier needs minor surgery? Will her increased risk of bleeding be recognized? The story of Kim H. came to my attention on Facebook. She is 39 years old and lives in Pennsylvania. I recently interviewed Kim over Zoom, as her story is important.

It’s easy to spot physical damage, such as swollen joints, nosebleeds, limps, and bruises, when one suffers from a bleeding disorder. But the psychological and emotional damage that may result is not as easy to see or treat. A U.S. survey of hemophilia patients, published a few years…

Growing up in suburban Milwaukee, I saw the world through a self-employed lens. My grandfather sold and repaired typewriters, a business he started in downtown Chicago in 1951, a time that must have been most colorful. My family settled in Milwaukee, where my father became the largest independent distributor of…

In addition to having hemophilia B and von Willebrand disease, I also am a caregiver to my 79-year-old mother, whom I live with in Florida. Avoiding COVID-19 has been difficult for us, as she was diagnosed with a severe immune deficiency at the height of the pandemic.

I recently had the honor of interviewing bodybuilder L.A. Aguayo over Zoom. He is 34 years old, has severe hemophilia B, and recently took second place in an international bodybuilding competition, the Arnold Amateur. I highly recommend his inspirational autobiography, “Finding Purpose in the Pain.” In his book,…

I’m diligent about oral healthcare. I use an electric toothbrush, floss every day, and visit my dentist every three months. My reasons for this diligence are many, but mostly I am afraid of bleeding from dental procedures. Mouth and gum bleeding are common for those living with von Willebrand…

I am lucky to live in the United States, where medication to treat hemophilia and von Willebrand disease is easy to obtain. Had I been born in a developing country, I might not be alive today. My treatment includes injections of expensive blood-clotting medicine called factor. Access to…

Stress has been a constant issue for me. I struggle to manage it, but I’m improving. If I could jump into a time machine and travel back in time, I would tell my younger self to chill out and learn how to breathe. I am a self-employed digital marketing consultant.

I recently participated in a webinar called “Mild Matters,” organized by the Hemophilia Federation of America. The purpose was to discuss challenges faced by people with mild bleeding disorders. When the discussion turned to self-advocacy, I began to think about my own history of dealing with von Willebrand disease…