Forty-six. That’s how old I was when I finally accessed the hemophilia care that I’d needed my entire life. I believe the reason it took so long was that I’m a woman. It may seem crazy to those who aren’t familiar with the bleeding disorder. For years, the misconception…
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The benefits of a one-time gene therapy were sustained for up to 13 years among men with severe hemophilia B with no new safety concerns emerging, according to newly published results from a clinical trial. The findings, which encompass the longest ever follow-up for a gene therapy study in…
Hemgenix (etranacogene dezaparvovec), the first and only one-time gene therapy approved for hemophilia B, has been approved in Switzerland, CSL Behring, the company marketing the therapy globally, announced. “The approval of Hemgenix in Switzerland marks an important milestone for patients, and we look forward to collaborating with…
Last week, I drove two hours to my hemophilia treatment center (HTC) in Tampa, Florida — not just to see my hematologist or get my labs done, but to meet with the physical therapist. The distance was long, but the trip was worth it. My knees have always been…
It’s been nearly five months since I became a mom to baby Cittie. In those months, my life has been transformed into something completely different. My social media feed, which used to be full of items about academics and career, is now full of articles about babies and…
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…
A 39-year-old man from Arizona became the first patient in Nevada to receive Hemgenix (etranacogene dezaparvovec), the first gene therapy to be approved for hemophilia B. The infusion was administered at the Cure 4 The Kids Foundation, under the supervision of Aimee Foord, director of the foundation’s bleeding…
My sons, Julian and Caeleb, are adults living with hemophilia. Julian is 28 years old, and Caeleb is 18. Having adult children is a new phase of life for me. While Julian is out on his own chasing the next audition, Caeleb is preparing to begin…
Hemophilia has required me to make some major adaptations in my life. One of the biggest came when I was younger and needed to start infusing medication on my own. At first, doubt and fear crept in. Can I really do this? Is it going to hurt? But…