For years, I saw wheelchairs and other mobility devices as symbols of limitation — signs of everything a person could no longer do. Then my youngest son, Caeleb, needed a wheelchair due to complications of hemophilia, and I began to see it through his eyes. What I feared would…
Discussion
Our 7-year-old daughter, Cittie, recently found herself at the top of a climbing wall at a neighborhood playground. She had managed the climb just fine, but when it came time to descend on the other side, she hesitated. Other children were doing it without much thought, while some parents were…
Discussion
In the spring of 2025, I set out to create a piece of art depicting both the challenges and the beauty of navigating treatment for hemophilia A. However, soon after I started the piece, my health plummeted, and I could no longer focus on art. Over the course of…
Discussion
Blood tests can give different readings of factor VIII (FVIII) activity after treatment with Altuvoct (efanesoctocog alfa), marketed as Altuviiio in the U.S., a study found. The differences were greater when FVIII levels were low or several days had passed since an infusion, highlighting the need for careful interpretation;…
Discussion
The letters start arriving in October. There are plan summaries, notices of benefit changes, and a glossy booklet with a smiling family on the cover. I’m fairly sure that family has never called a specialty pharmacy to ask where their delivery went. For most people, open enrollment is a chore.
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.
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