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Finding the courage to ask questions as a hemophilia parent
At 6 p.m., Monday through Friday, my television is faithfully tuned to “Jeopardy!” The theme song and sounds of the buzzers usher in a comforting ritual each night that’s part of my home. “Jeopardy!” is a long-running quiz show where contestants are given the answers and must respond with a…
Why knowing which hemophilia treatments don’t work is valuable
I groggily sat up in the hospital bed, sipped some water, and stared into the distance. Suddenly, a nurse pointed at my gown and shouted, “You’re bleeding!” But I’d taken so many painkillers that I barely reacted. This was 2003, when I had laparoscopic surgery to treat endometriosis.
A man with hemophilia B shares his gene therapy story, part 3
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…
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…