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
- Growing up before treatments for hemophilia were safe, part 3
- Early prophylaxis tied to less joint damage in severe hemophilia A
- I tell my son, ‘When you’re eating an elephant, take it one bite at a time’
- Holding space for grief and love in the hemophilia community
- Hand swelling is first sign of aquired hemophilia A for new mom: Report