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
- January’s reset means the system restarts, but our bodies do not
- People with hemophilia face 46% higher risk of bone fractures
- It’s important to find moments of joy amid the darkness of hemophilia
- With hemophilia, time went from standing still to flying by
- An unsettling dream reinforced the importance of building connections