I’ve been standing in front of my closet longer than I’d like to admit. It’s not vanity. It’s because I know what I want the clothes to do: I want to walk into a marble hallway and have the person across from me see someone steady, prepared, worth listening to…
Discussion
When my sons were small, I didn’t give speaking up on their behalf a second thought. As toddlers, they had little interest in sitting through difficult explanations about their bodies and about hemophilia. They wanted to be free to play with toys and their friends. When internal bleeds…
Discussion
The swimming pool was the best place to be for a young girl growing up in the hot Texas summers. I’d hand over my crumpled dollar at the counter and spend the whole day there. After a quick shower, I’d grab my face mask, towel, and snack bar money, then…
Discussion
Repeated dosing of the long-lasting factor replacement therapy Altuviiio (efanesoctocog alfa) over a short timeframe may not increase the risk of dangerous clotting events, according to studies in a mouse model of hemophilia A. Blood analysis showed an increase in global coagulation function, which measures the formation and…
Discussion
Every June, my social media feeds fill with rainbows. My LGBTQ+ friends celebrate Pride Month, while others share deeply personal stories about identity, belonging, and acceptance. Some are hopeful, some heartbreaking, and most carry a bit of both. Every year, I read those stories and find myself thinking about my…
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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