Hemophilia and Me – a Column by Jennifer Lynne

Ina Fowler, 68, of Brooksville, Florida, lives with several conditions, including hemophilia C, platelet dysfunction, atrial fibrillation, and peripheral artery disease. She recently suffered a brain bleed. To learn more about Ina’s journey, I spoke with her via Zoom. When Ina was in second grade, she hemorrhaged after a…

When you live with a bleeding disorder, you quickly learn that the words people use matter almost as much as the treatments themselves. I’ve been called a “carrier” and a “hemophiliac,” and told that my condition was “mild” or “moderate,” as if these words fully described the challenges…

When I was diagnosed with bleeding disorders in the 1970s, the world of hemophilia looked very different. Treatments were scarce, hospital visits were frequent, and the idea of living a “normal” life seemed like a distant dream. Today, I meet children and young adults with hemophilia who’ve never known…

I recently had the honor of attending the National Bleeding Disorders Foundation’s (NBDF) Bleeding Disorders Conference in Aurora, Colorado. I’m grateful for a travel grant I received from the NBDF that made it possible for me to attend. The conference was a fabulous and energizing mixture of connecting with…

The other day, a neighbor stopped me in the walkway and asked, “Are you feeling OK?” I said yes, I was fine, though I was a little surprised by the question. Then came the explanation: They’d read I have a blood disorder. That moment stuck with me. On the outside,…

When I walked into the LadyBugs conference in Salt Lake City last weekend, the energy was immediate: part reunion, part rally, and part safe space for women who understand life with a bleeding disorder. Hosted by the CHES Foundation, LadyBugs is a program for women ages 16 and older who…

Last week, I had two dental procedures that required pretreatment because of my hemophilia B and von Willebrand disease (VWD). After prepping one of my teeth for a crown, my dentist took an X-ray that revealed an abscess, which meant I needed a root canal, too. Both procedures…

“Don’t let anyone cut into you without talking to your hematologist first.” That’s what my hematologist told me decades ago, and I’ve never forgotten it. It’s advice that may have saved my life more than once. For people living with hemophilia, von Willebrand disease, or rare factor…

A few years ago, I woke up to find my right breast swollen, hot, red, and extremely painful. Beneath the skin was a lump that felt about the size of a golf ball. I’d had mastitis before, in the other breast, so I wondered if this pain could be…

A few weeks ago, I spent a long weekend at a women’s retreat hosted by the Coalition for Hemophilia B in Stone Mountain, Georgia. Years ago, I attended the iconic laser show at Stone Mountain and have always wanted to return. I was thrilled to find out the show was…