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…
Hemophilia and Me – a Column by Jennifer Lynne
“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…
Mother Nature was not kind to my area of Florida last year. First came Hurricane Helene, bringing widespread flooding. Just two weeks later, Hurricane Milton struck, unleashing high winds and another round of devastating floodwaters. The effects are still visible today: Businesses have shuttered, restaurants remain closed, and the damaged…
Even now, I hesitate to tell doctors I have hemophilia. I’ve lost count of how many times I’ve been met with blank stares, skepticism, or outright dismissal. Instead, I’ve learned to say, “I have a bleeding disorder.” It’s safer. It avoids the uncomfortable silence, the subtle smirk, or the…
When I was diagnosed with hemophilia B and von Willebrand disease in the 1970s, I was just 10 years old. Back then, most people didn’t believe girls could have hemophilia. I was told that my “deep blood” didn’t clot properly and sent on my way. Bleeding…
Last in a series. Read parts one and two. In the final installment of my three-part interview with Chip Hailey, 75, we explore what his life looks like after gene therapy. Chip shares how Hemgenix (etranacogene dezaparvovec) has transformed his daily routine, his mindset, and his outlook…
Second in a series. Read part one. In part one of my interview with Chip Hailey, a 75-year-old from Tennessee, we explored what led him to pursue gene therapy for hemophilia B, his lifelong journey with the condition, his hopes for a new chapter, and the road to…
First in a series. Have you ever wondered what it’s really like to receive gene therapy? I know I have. So when I had the chance to interview 75-year-old Chip Hailey of Tennessee — one of the participants in a clinical trial for Hemgenix (etranacogene dezaparvovec), the first…
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- My husband still experiences seizures from a childhood brain bleed
- Little interest in gene therapy for many with severe hemophilia: German study