A small study in Japan suggests that younger women identified as hemophilia carriers have greater access to information and specialized care than women in an earlier generation, but still face uncertainty about how the condition may affect their lives. The nature and timing…
Discussion
I never thought my life would be so challenging when I gave birth to my son, Zyko, who was diagnosed with severe hemophilia A. But he gives me a reason to keep going and give him everything I can. When I learned that my son had hemophilia, I…
Discussion
Liver enzyme levels may rise again as corticosteroid doses are gradually reduced in people with hemophilia B treated with Hemgenix, a case report suggests. Elevated liver enzymes are a known side effect of the gene therapy that can signal liver inflammation or damage. Corticosteroids are used to treat…
Discussion
The email started with two words: “Good night.” I understood it right away. It’s what a mother writes when the house is finally quiet, but her mind isn’t. Her name is Deiralina Morillo, and she lives in the Dominican Republic. Two of her three children, both daughters, have factor…
Discussion
If I could change one thing about my parenting, I would have learned to manage my temper during my sons’ factor infusions. Julian and Caeleb are 10 years apart, but both live with hemophilia A and developed a fear of needles around age 6. My wife and I tried…
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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