throwaway2136865

I don't truly know what brings me the most joy. I enjoy typical guy and young adult things. But I love making people happy. I am very fortunate to have lots of people who truly care about me. I get lots of support from my church family.

As for my daily life, Epidermolysis Bullosa is very painful. I have large open wounds. I wear a bandage that covers my torso, like a vest to protect my skin. That has to be changed every day, and is uncomfortable and often painful. In the summer I have to avoid heat. The cold also makes me hurt because my skin is thin. I cant participate in any contact sports. I often have trouble opening things, like bottles and cans. The also takes an emotional toll on me. I'm always dependent on someone to help me. And I have insecurities. I'm always trying to cover my skin. Dating is hard and it's embarrassing to explain the disease to new friends.

I hope that wasn't a pun...

I can, but I've never been too interested in them. I'm more of a watch-Netflix-all-day person.

I have a mild form of the disease and have what's called mosaicism, which means that my face, arms, and legs are perfectly normal, so they aren't sensitive. The main area affected is my torso. I wear a bandage, much like a vest, that is changed every day and protects my skin for the most part. Without the bandage it is extremely sensitive. There are places that just lightly touching causes extreme pain.

School was rough at times. Heat affects my skin pretty badly so I could never go out to recess when it was hot. I couldn't play contact sports and often had to sit out of gym due to blisters on my feet. I never really experienced bullying. K-6 was small enough that everyone knew me well and was used to my skin. They were cautious of me, but never mean. Going to a new school in 7-8 and 9-12 was intimidating. No one knew about my skin. They were all very curious, but very nice once they understood. I was always trying to hide my skin though, feeling embarrassed.

I was wondering if anyone would notice that! You are correct. No fingernails or toe nails. They fell of when I was young, which is a blessing. My skin itches a lot and scratching can cause it to tear, so no nails helps preserve it.