Note: This column describes the author’s experiences with BeneFix (coagulation factor IX). Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy. I expected factor to help a bleed. I didn’t expect it to change what my back could do. For months,…
Discussion
Children’s Hospital of Philadelphia (CHOP) has been awarded up to $38.9 million to advance the development of personalized gene‑editing therapies for four groups of rare genetic disorders — one of them hemophilia. The five-year award comes from the Advanced Research Projects Agency for Health (ARPA‑H) under its…
Discussion
Raising two sons with severe factor VIII deficiency, otherwise known as hemophilia A, often overwhelmed me. When I look back on the most terrifying moments, the vision is always the same: I am submerged beneath a large body of water, fighting to reach the surface so I can breathe.
Discussion
Back-to-school season has always been one of my favorite times of the year. Walking through aisles full of pencils, erasers, spiral notebooks, and colored pens takes me back to my elementary school days. I especially loved choosing a big pack of construction paper. Opening a new package, breathing in the…
Discussion
Although it’s often mistakenly thought of as a male disease, hemophilia affects a substantial number of women and girls, manifesting with symptoms that can include heavy menstrual periods and mental health challenges. That’s according to a new review paper that examined “each stage of the process” for female patients…
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.
Get regular updates to your inbox.
