My son Caeleb recently had his wisdom teeth removed. Caeleb has severe hemophilia A with an inhibitor, but hemophilia hasn’t been the main focus in his life for years. Nevertheless, before the surgery, he called the hemophilia treatment center (HTC) to ask about what steps to…
Discussion
Note: This column describes the author’s and his sons’ experiences with Hemlibra (emicizumab-KXWH). Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy. The dog days of summer can lull you into a false sense of security. There’s not much going on,…
Discussion
While patient-reported measures can provide valuable insight into an individual’s experience with hemophilia, a study suggests they may not be reliable for comparing outcomes across different hospitals. “Patient-centered outcomes demonstrate low to moderate reliability for hospital-level comparisons,” researchers wrote in the paper, “Assessing the Real-World Value of Hemophilia…
Discussion
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…
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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