More than half of people with hemophilia receiving prophylactic (preventive) factor replacement therapies at two treatment centers in Brazil did not collect enough medication to follow their prescribed treatment regimen, a real-world study has found. This gap between “prescription and practice” was evident even though Brazil provides universal,…
Discussion
I’ve realized that one of the greatest challenges of parenting is teaching children how to care for others without making them feel responsible for everyone’s well-being. This is especially complicated when one parent lives with a disability or chronic illness. My husband, Jared, has severe hemophilia B and epilepsy.
Discussion
Three years. That’s how long I put off a colonoscopy I’d been told not to put off. This wasn’t a first screening I could shrug off. At my previous colonoscopy, doctors found and removed a precancerous polyp. The instruction was simple: Come back in five years for a follow-up. And…
Discussion
Hemophilia A patients rack up high hospital bills, driving costs for the healthcare system higher, a study from Canada showed. “This study confirms that even with improved [treatment to reduce bleeding], hemophilia A has a non-negligible impact on healthcare system costs,” researchers wrote in the study, “Population-Level Real-World…
Discussion
When my oldest son, Julian, was 6, he started a ritual whenever I traveled away from home: He selected a small stuffed animal from his collection and placed it in my suitcase. When I asked why he had given me the toy, he responded, “Because I don’t want you…
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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