Instead of Powerball, I have won the rare bleeding disorder lottery. I have von Willebrand disease and hemophilia B, a less common form of hemophilia that arises when a blood-clotting protein called factor IX is missing or deficient. My diagnoses are rare within a rare community. I often feel like a…
Rare Disease Day 2022
My Facebook friends fall into a few categories: biological family, colleagues and friends from my music and teaching days, high school and college friends and teachers, and my “bleedin’ folk” family. Raising two sons with severe hemophilia is a blessing because of the people in my life (I work…
Recent Posts
- Supporting mental health when hemophilia treatment isn’t guaranteed
- With factor IX deficiency, saying I have ‘hemophilia’ isn’t specific enough
- Protein marker may detect early joint damage in hemophilia A
- After my son’s diagnosis, hearing he’d ‘live a long life’ what just what I needed
- Guest Voice: What I’ve gained from doing my own hemophilia infusions