Easter Sunday was wonderful. The pipe organ at our church hadn’t worked in four years, but thanks to generous donors, it was finally restored. We revealed it on Easter with a brass quintet and choir, and the music was truly beautiful. As a classically trained oboist, I am deeply…
A single dose of the gene therapy Roctavian (valoctocogene roxaparvovec-rvox) continues to prevent bleeds and the need for preventive treatment (prophylaxis) for up to five years in most treated men with severe hemophilia A, according to final Phase 3 trial results. Activity of factor VIII (FVIII), the clotting…
Discussion
A recent study found that people with hemophilia who report better mental health may be more likely to adhere to their prophylactic treatment. It’s a compelling idea — that mental well-being can influence how consistently someone follows a care plan. But as I read through it, I couldn’t…
Discussion
In recent years, I’ve found myself simplifying my diagnosis in medical settings by saying I have a bleeding disorder. It’s the simplest way to explain what is actually a combination of hemophilia B and von Willebrand disease. It’s broad enough to be understood, and…
Measuring levels of YKL-40 — a protein associated with inflammation and tissue remodeling — may help detect hemophilic arthropathy, the joint damage caused by repeated bleeding, in people with severe hemophilia A, a study found. The researchers said the results “suggest that YKL-40 has potential as a biomarker, with its…
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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