Lately, I’ve come across more conversations about what it means to live independently with a bleeding disorder. They usually focus on big milestones: moving out, going to college, starting a career, or taking charge of one’s own healthcare. It made me curious, especially now that my husband, Jared, and I…
Discussion
I was scrolling Facebook last week when a post stopped me cold. It was from Ashley Hall, a mom I’ve come to know in this community. She has two boys with hemophilia A, one of whom, Maverick, also has an inhibitor. An inhibitor develops when the immune system…
Discussion
Women and girls with hemophilia continue to face delayed diagnoses, unequal access to treatment, and underrepresentation in clinical trials, even though many experience significant bleeding, according to a new analysis. Researchers described these interconnected problems as the “XX gap” in hemophilia care. Closing this gap, they said, requires moving…
Discussion
My oldest son, Julian, is a working actor in a touring production. For this show, he is trained to perform both male lead roles. Over the last six months, he performed one role, and he recently began the other role in a new city. Even though he knows the script…
Discussion
Long-term treatment with Hemlibra (emicizumab) provided sustained protection against bleeding for up to five years in people with hemophilia A, with no new safety concerns identified, according to a large real-world study from Canada. The study, which analyzed data from 710 people with hemophilia A, found that more…
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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