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Life With Hemophilia: Part 3

Hello once again! Matt Burns here coming at you with part 3 of this mini-series. In the last part, I talked about my childhood and my most severe bleed. If you missed it, you can find it here.

One of the places that I really had fun and felt normal was at a hemophilia camp called Camp Ivy. I had never met another hemophiliac outside of my family until I went to Camp Ivy. I felt normal and truly accepted. Nobody questioned me; nobody was always checking to make sure I was ok; nobody was trying to keep me in a bubble to keep me safe while I was playing. I felt like a real kid. Camp taught me so many things too: how to keep myself safe, how to socialize without having to worry about getting bleeds, and how to give myself a shot instead of relying on my mom. They taught me how to be independent. I talked with older hemophiliacs around the camp. Seeing them still being able to function at an older age really gave me peace of mind. At 17 years old, I already have no cartilage in my ankle, and I know I am going to lose more in different places the older I get. I am scared to grow up with hemophilia, but the older guys were able to give me some peace of mind when I would get restless.

Photo Courtesy: Sara Allizadeh

Camp was honestly one of the best places I have ever been to. Swimming, arts and crafts, outdoor games; it was incredible. And nobody told me, ¨no, I do not want you to get a bleed.¨ They taught us how to be safe and if we got a bleed, we would just dose up and sometimes just deal with the pain and jump right back in. It was too much fun. I stopped going though because I moved. I miss camp sometimes, but I have learned enough from everybody there to be independent with my care for hemophilia.

For more information on the camp, click here.

For more information on hemophilia in general, click here.

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