Our Bleeding Disorders Stories

I learned to self-infuse pretty quickly. I took prophylaxis before games to try to prevent any injury … Changing how I played soccer however was hard for me. Honestly, it took me years to change my playstyle while at the same time still being able to play at a high level … I had to avoid contested headers and be careful about situations that I put myself in on the field. Learning how to do this in the end made me a better player.

Perhaps dance is the medium through which we show the world who we truly are and who we can be. … I live my life just as I did before I was diagnosed. Nothing has changed really; I only know more about myself and who I am.

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 tried basketball, swimming, karate but ultimately fell in love with lacrosse. The sport didn’t become too physical until 7th grade when I awesomely blocked a shot with my elbow. It swelled up instantly and was very painful.

Nonetheless, we are optimistic about the future of medical innovation to treat Colin and all people with bleeding disorders. But regardless of what medicines look like in the future, we are confident that our children will both have opportunities to be themselves and pursue their chosen paths. 

In addition, they hosted a summer camp and a teen retreat that I went to. It was amazing to meet other teens like me. Up until that point, I didn’t know anyone with a bleeding disorder and didn’t know much about myself.

By the time I was 5 I had already become interested in dance, so my siblings and I started irish dance which we thought would be a safe option with a bleeding disorder. It definitely didn’t turn out that way …

When I played sports I almost forget I am not like the other kids. That was until I took a hit and it turned purple. Learning how to overcome my blood disorder has been hard but finally I can.

I remember when my grandma would have to call 911 and the paramedic would pick me up and carry me to the ambulance.

Was the decision to go snowboarding a bad one? Should I have taken the med immediately after I fell? There are always these questions.

I love sports, all aspects of sports, and on the first day I played sports I felt a rush that never left. Like many boys my age, I played baseball and got hit in the face a few times; a small but necessary part of the experience. With the love of sports came the realization that I will get hit, hurt and of course bleed from some injuries…