I grew up in a mostly white suburb of Houston. My dad, who was of Mexican descent and had dark skin, spoke English as his second language. He worked hard, went to school, and earned both his bachelor’s and master’s degrees in education from the University of Texas. He became…
Discussion
A new type of gene-editing treatment being developed by researchers in Japan corrected mutations causing severe hemophilia B in mice, restoring production of the missing clotting factor IX (FIX), which causes the rare bleeding disorder. The scientists say their novel nonviral treatment — which does not use an inactivated…
Discussion
I don’t usually ask myself whether I want something. I ask whether I can justify wanting it. Is it practical? Financially responsible? Useful enough? Meaningful enough? Will I regret spending the money? Could I explain the decision to someone else without sounding irresponsible? I suspect many care partners know this…
Discussion
When I was in high school, I wasn’t just excused from gym class; I was prohibited from participating in every sport except swimming. While my classmates learned volleyball, basketball, and track, I sat on the sidelines because my bleeding disorders made physical activity too risky. At the time, I accepted…
Discussion
Note: This column was updated July 2, 2026, to correct the year of the author’s hospitalization for iliopsoas bleeding to this year. Having severe hemophilia A means everything can be life-threatening. In February, I had a tooth extraction that required sedation after a year of preparation. It took that…
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.
