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Moving helps me see hemophilia’s varied effects on my sons
My wife, Cazandra, and I had a brief discussion as we continued packing what seemed like a million boxes for our move from Rio Communities, which is near Albuquerque, New Mexico, to Las Cruces, about 200 miles south. Between the phrases “That goes there” and “Put that box in that…
An athlete’s mindset can be an asset when living with hemophilia
My husband, Jared, lives with hemophilia B and a seizure disorder. He also lifts weights, performs bodyweight workouts, and swims. Now and then, someone will see him doing laps in the pool and ask, “Are you a professional?” To which he responds, “No, the water just loves me more.
It’s a myth that the grass would be greener without hemophilia
My family gathered to take pictures. We drove to the Bosque, the cottonwood forest that borders the Rio Grande and runs through New Mexico. It’s a beautiful place with running water and trees. The photographer took numerous action shots, one of which brought a reality check. The photographer had us…
A man with hemophilia B shares his gene therapy story, part 2
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…
Jivi (damoctocog alfa pegol) for hemophilia
Jivi (damoctocog alfa pegol) is an approved lab-made replacement therapy designed to prevent or treat bleeding episodes in previously treated children and adults with hemophilia A. It is administered via into-the-vein (intravenous) infusions.
It’s time to change how we classify hemophilia severity
While riding a bus at the first hemophilia conference I attended, I met a young man who had mild hemophilia, just like me. Unlike me, he’d been diagnosed close to birth. Then he shared his factor VIII levels; shockingly, they were higher than mine. I sat in disbelief. I’d…
Acquired hemophilia linked to rare liver disease: Case study
Acquired hemophilia A (AHA) arose in a 48-year old man with primary biliary cholangitis (PBC), an autoimmune liver disease, according to a case study. While AHA has been associated with autoimmune disorders, the researchers said a connection between AHA and PBC had not been reported previously. While “the…
A man with hemophilia B shares his gene therapy story, part 1
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…