Learning to Accept and Talk about Von Willebrands
Learning to Accept and Talk about Von Willebrands
Jeff, 16, USA
When I was little, I mean really little, like 3 – I had “soft ankles.” I was seen by an orthopedic specialist who told my parents to purchase orthotics for my pronating ankles. My mom put me in hard shoes, high top sneakers and work boots. Problem solved… for a time. Hemophilia and micro bleeds were not immediately considered as a cause. But pretty soon after that I was diagnosed with vWD when the shoes stopped working and I started looking like a prize fighter with too many bruises. The hard part is that I have not always been super open about it.
In grade school, I hated physical education classes, and I mean HATED it. When I ran, it hurt—a lot. My ankles and knees would swell—not a lot, but enough to see that my joints were not happy. I was in pain, and I was labelled as lazy. I just wanted to be normal; I did not want to admit to anyone that I had vWD. I really tried to hide it … for a long time. I didn’t want to be active, I didn’t want to play sports, yet at the same time I wanted to be part of a team.
Finally, in 8th grade, my parents signed me up for camp. It was a life changing experience. I met older guys at camp. They helped me understand and learn my limits. I could do anything I set my mind to within the limits of my disease.
I’m a junior in high school. I play baseball and I help manage the team. I like it. Sometimes I have to sit out when my knees are bothering me, but because I’m honest, my team and my coach are good with it.