Laughable. That’s how Heidi Bentz and Lucrecia E. Choto, two women who struggled for years to receive a proper diagnosis of von Willebrand disease (VWD), described the results of a 2004 survey by the U.S. Centers for Disease Control and Prevention (CDC) of 75 women who…
Read more
CAR T-cell therapy, a type of treatment that weaponizes the body’s immune system and was originally developed to treat cancer, for the first time successfully treated a patient with acquired hemophilia A (AHA), a study reported. The study, “Anti-CD19 CAR-T cell therapy for acquired hemophilia A,”…
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.
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…
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…
Becoming educated and informed about hemophilia is a good first step. Here you’ll find general information about the disease, including diagnosis, symptoms, and causes.
It helps to know others have been where you are now. Here’s a collection of our columnists’ words of wisdom to help you along on your hemophilia journey.
There is no cure for hemophilia yet, but here you can find more information about current therapeutic approaches, as well as experimental treatments that are in the pipeline.
Get regular updates to your inbox.
