Patterson: recessive Dystrophic

My name is Patterson, and I'm 9 years old. I have a condition called recessive dystrophic epidermolysis bullosa (RDEB). It's a really big name for something that makes my skin very fragile. Imagine if your skin was as delicate as a butterfly's wings. That's what it's like for people living with EB.

Every day, I have to be super careful because even the smallest bump or scratch can cause my skin to blister and hurt a lot. Sometimes, I can't play with my friends the way I want to because I'm scared of getting hurt. I have to wear special bandages to keep my skin safe, and my mom and dad help me change them every day. It can hurt a lot, but I try to be brave.

Because of RDEB, my skin can easily tear and get really painful wounds that take forever to heal. These wounds can also leave scars and other problems. Sometimes, the blisters are even inside my body, like in my mouth or throat, making it hard to eat or swallow. For me, I get most of my wounds on my feet, elbows, hands and legs. This past year I have been able to take new FDA treatments to help me heal quicker and better, and I am really happy to see that people are cheering on kids like me to have a better quality of life. 

Joining the Plunge fundraising events with EBRP has shown me what a difference I really can make. So many of my friends and family have come to support me and others with EB and it makes me feel strong and hopeful. There have been so many people that I don't even know that want to help. It means a lot to me because I have friends with EB, like Brooks, Moe, Elodie, and Eli. I am happy this helps them too.

There is much more to me than just my EB. In fact, I mostly try to think about other stuff. I really like playing video games with my friends, playing with my dog, Bruce, and I love history. My family likes to travel, and we have been picking places that we can learn about when we visit. I also really like going to concerts. 
I hope that by sharing my story, more people will learn about this condition and support research to find better treatments and a cure. Thank you for listening to my story.
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-Patterson