If I could change one thing about my parenting, I would have learned to manage my temper during my sons’ factor infusions. Julian and Caeleb are 10 years apart, but both live with hemophilia A and developed a fear of needles around age 6. My wife and I tried…
Discussion
Halloween is one of my daughter’s favorite holidays. She looks forward to creative costumes and makes drawings of pumpkins, ghosts, and bats. Here in the Philippines, people have different attitudes toward the occasion, but that hasn’t dampened her enthusiasm. As I write this, we have a Halloween display in our…
Discussion
By educating and empowering patients and their families, clinicians can help improve access to accurate diagnoses and care for women and girls affected by hemophilia. That’s the argument made by a pair of doctors in Belgium in a paper titled, “How I Identify and Diagnose Carriers of Hemophilia…
Discussion
Every new hematologist asks the same question: “Who else in your family has it?” For most of my life, the answer was nobody. Nobody with a diagnosis, anyway. I was diagnosed with hemophilia B and von Willebrand disease (VWD) in 1975, at age 10, and I was…
Discussion
Treatment disruptions during the height of the COVID-19 pandemic were a substantial driver of psychological distress for people with hemophilia in China, causing more stress than the virus itself, a study found. The researchers said the findings underscore the importance of reliable access to treatments, especially self-administered ones, to…
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.
