My son Julian posted a picture on Facebook this week that took my breath away. I had to look at it twice to make sure it was really him. In the photo, he was sitting on large rocks on the shore, water swirling around his feet, his hands open as…
Discussion
I use Spotify to listen to my favorite podcasts, audiobooks, and music. Downloading what I like is simple, but there’s another fun part: the app makes playlists based on what you listen to. One recent playlist really surprised me. The playlist Spotify picked for me was called Oldies Mix.
Discussion
Researchers spent years searching for a new treatment option for people with hemophilia A or B before arriving at the therapy that became Hympavzi (marstacimab). Scientists at Pfizer, the company that markets Hympavzi, described the search in a study, “Discovery and optimization of marstacimab, a human monoclonal antibody…
Discussion
I’ve noticed something strange over the years: Adults with hemophilia sometimes disappear from conversations that were built for them. I first noticed it in support groups. The louder caregivers became, the quieter some people with hemophilia seemed to get. Some stopped participating altogether. Others drifted toward spaces led by…
Discussion
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…
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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