Written by Bridget Edwards

Posted: May 27, 2026. This article was originally shared in our Spring 2026 Newsletter. 

Afibrinogenemia is a big word that most people can’t pronounce–sometimes even medical providers. To me, I’ve become somewhat of a professional at saying it, as it’s the name of my rare bleeding disorder. Growing up, some of my friends learned how to say it by phonetically turning it into a little song, using high and low notes to help them remember it faster: “A-fye-brin-oh-juh-nee- mee-uh!”

I was diagnosed when I was just one day old. With my bleeding disorder, my body does not produce fibrinogen, a critical part of the clotting cascade that helps form blood clots. When the heel sticks performed at birth would not stop bleeding, I was rushed to the nearest larger hospital to determine what was wrong. It was there that my parents learned I had an extremely rare bleeding disorder, one the diagnosing hematologist had never seen in a patient before. Fortunately for my parents, and for me, that hematologist truly was a lifesaver, as so many others have been throughout my life as well. The delivering doctor had initially told my parents that I wouldn’t survive long, stating that you can’t live without fibrinogen. Obviously, he was wrong.

I receive an IV infusion of a fibrinogen concentrate that takes roughly an hour to infuse, and with not the best veins, and previously poor port experiences, infusion days are not always the most exciting, but doing a prophylactic dose of my clotting factor has helped a lot with preventing internal bleeding. I was able to live a relatively active childhood, as my parents and my hematologist worked closely together to keep me safe. There were a few accidents, falling out of a tree (whoops!), colliding with someone on the volleyball court (whoops again!), but I was still able to play sports like softball, tennis, and volleyball. I even played on the Junior Olympic Volleyball team.