It happened three times in 48 hours. I didn’t go looking for them — the conversations found me. Three different people from our bleeding disorders community, none knowing about the others, told me a similar version of the same story. They had tried to talk to their mothers about bleeding…
Discussion
A proposed bill in the U.S. House of Representatives — one dubbed the FED UP Act for short — is aiming to reduce barriers to care for women and girls with bleeding disorders, including those who carry hemophilia-related genes. The legislation, fully, the Fostering Effective Diagnosis and Treatment…
Discussion
My house is on a cul-de-sac, and right behind my street is undeveloped desert leading up to New Mexico’s Organ Mountains. I love walking on the trails in the open area whenever I feel stressed or anxious. Even when my struggles feel overwhelming, making my way through the otherworldliness of…
Discussion
I struggle with something that affects me on every level — spiritually, emotionally, and physically. It’s called perfectionism. My perfectionism started when I was a kid. I used to rearrange my room all the time, making sure everything was in its place. A tidy space made me happy. As a…
Discussion
I don’t get headaches often, but when I do, I absolutely hate them. They can be particularly worrisome for a person with hemophilia. Because I am not prone to headaches, it is a bit disconcerting when I get one. Having hemophilia A means I am often worried about…
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.
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