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…
Discussion
Long before our sons could advocate for themselves, my wife, Cazandra, and I spoke on their behalf. At the beginning of every school year, we met with the principal, school nurse, social worker, faculty, and other staff members who would work with them. We explained concerns related to their…
Discussion
Inno8, a potential oral treatment to prevent bleeds in people with hemophilia A, appears more potent and long-lasting than currently available injectable treatments in preclinical laboratory and animal studies, a study suggested. The candidate therapy, being developed by Novo Nordisk, is undergoing clinical testing and has completed…
Discussion
“Mom, I want to visit somewhere famous!” “Sweetie,” I replied to my youngest child, “We live in one of the most famous cities in the world.” Exasperated, she chirped back, “But it doesn’t feel famous.” A few months later, our family took a cruise. We started in Genoa, Italy, sailed…
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.
