I struggle when I lie down to sleep, and my legs hurt so much that I need to move them. I don’t get a good night’s sleep, and when I awake in the morning, my brain is foggy and I feel like I’m moving around in a bubble. I am…
Discussion
A computer-aided diagnostic tool using artificial intelligence (AI) can accurately detect joint bleeds in adults with hemophilia, a study showed. The researchers said the findings may lead to a way for patients to obtain ultrasound images at home, rather than traveling to a facility. “The CAD [computer-aided diagnosis] system…
Discussion
Sleep has always been a troublesome subject for me. Even as a child, it felt optional — something I could push aside in favor of thoughts, ideas, or whatever held my attention in the moment. In high school, that tendency only intensified. Sleep became negotiable, almost expendable, as if I…
Discussion
There are moments when I’m reminded just how much I depend on something most people rarely think about. I live with von Willebrand disease, and my treatment depends on Humate-P (antihemophilic factor/von Willebrand factor complex [human]), a plasma-derived therapy. This medication is more than just a vial;…
Discussion
Regular and sustained physical exercise — including aerobic activities, strength training, and balance exercises — may help ease chronic pain, improve physical performance, and enhance quality of life in people with hemophilia of all ages, according to a review study. The researchers found that exercise is generally safe when…
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.
