I am an advocate for people with bleeding disorders.
In 2007, our youngest daughter Star and I were diagnosed with von Willebrand Disease (Type 2M), a rare bleeding disorder also known as pseudo-hemophilia. It is an inherited disorder that impacts the blood’s ability to clot properly. As a group, bleeding disorders like vWD and hemophilia are rare.
For a long time, it was believed that bleeding disorders only affect men. But in 1926, Finnish pediatrician Erik Adolf von Willebrand, discovered a different type of bleeding disorder that equally affects men and women.
How our journey started…
I had always thought that it was “normal” for girls and women to bleed heavily during their monthly periods. After all, I grew up seeing the chamber pot (arinola) in my parents’ room filled with red liquid on the weeks that my mom had.
It was not unusual for us—my mother, my sisters and I—to go home unplanned on days we had our periods because of blood stain. Our mother knew she was a “bleeder.” Like her, we would all “bleed” for weeks to months. But at a time when the Internet was still unknown and medical journals were hard to access, doctors did not have any explanation on our excessive and prolonged menses. Only boys and men could have bleeding disorders, we were told.