Author Archives: Jennifer Lynne

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…

I recently visited the small town of Arcadia, Florida, which is not far from my home. Arcadia holds an important place in history for the topic of hemophilia and AIDS. The story of what happened there is a lesson about how ignorance can fuel hatred and knowledge…

For most of my 56 years, I’ve felt isolated from the hemophilia community. Before the internet — yes, youngsters, there was such a time — I had very little education about my bleeding disorders and no idea what to expect. I felt no sense of community. Hemophilia didn’t run in…

As a woman affected by the bleeding disorders hemophilia B and von Willebrand disease, I realize that increasing awareness about bleeding disorders in undiagnosed women and girls is essential. All women should be aware of the symptoms of a bleeding disorder and be tested if warranted. Bleeding disorders, even mild…

Instead of Powerball, I have won the rare bleeding disorder lottery. I have von Willebrand disease and hemophilia B, a less common form of hemophilia that arises when a blood-clotting protein called factor IX is missing or deficient. My diagnoses are rare within a rare community. I often feel like a…