People have often known me by a role. The former gifted child (now neurodivergent adult). The wife. The mother. The HemoWife. Each one belongs to my story. Some have brought me work I care deeply about. Writing about life with my husband’s hemophilia has given me a…
Discussion
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…
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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