Hemophilia doesn’t just alter bodies and routines. Over time, it can also quietly shape expectations about who leads, who manages risk, and who carries responsibility. These expectations are rarely spoken out loud, but they’re powerful enough to follow people into adulthood, partnerships, and marriage. What complicates things is that…
Discussion
First in a series. Some people in the bleeding disorders community seem like they’re larger than life — not because they seek attention, but because their lives intersect with so many pivotal moments in our shared history. Lee Hall is one of those people. I know Hall through his advocacy…
The World Health Organization (WHO) executive board approved a resolution designed to improve access to diagnostic testing and treatment for people with hemophilia and other bleeding disorders. The resolution calls on WHO member states to take actions to improve access to quality care for people with bleeding disorders. It…
Discussion
Second in a series. Read part one. Both of my sons were diagnosed with severe hemophilia A a few days after they were born. But that’s where their similarities end. As I shared last week, things went smoothly after we switched to a more flexible way of caring…
Discussion
Whenever I’m on social media, I find myself questioning everything. Is that picture real or made by AI? Is this headline accurate? Are these videos genuine? I mostly stick to following family and friends, though I do enjoy dog videos. When it comes to messages from strangers, I’m pretty cautious.
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.
