EB at Eight – Written by an 8-Year-Old

I’ve written and expressed how living with EB has affected me and my life. I’ve mentioned that my eight year old also has EB. Thankfully, her EB is fairly mild, even more mild then mine. She was diagnosed when she was six because the blisters on her hands would not go away and they would not callus. She wanted to share some of her story. I’ve corrected a little bit of her grammar for clarity, but tried to leave it as is as much as possible. – Kylee’s Mom, Katrina

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“Hi, my name is Kylee and I am 8 years old. When I was in Kindergarten at recess I was on the monkey bars when I realized I had a blister on my hand so, when I got home I told my mom and when she saw my blister she took me into her room and popped it. The blisters kept getting worse and my mom took me to the doctor. The doctor took a look at my hands and told me I had EB. I asked what EB was and she said it’s a medical condition which causes blisters that don’t callus.

In First grade, when people or kids saw my hands, they would run away from me which then I had no friends to play with except my best friend, Katie. When I got home one day, my mom asked how my day was and I said that it was horrible, and she asked why was my day horrible and I said that because at recess nobody played with me except Katie and then mommy got me monkey bar gloves so I could play on the bars.

When I was at school one day, I got back from recess and I put my gloves down on my desk. I went to ask the teacher something and when I got back to my desk my gloves where gone. I was upset and when I got home I told my mom that my gloves are gone so my mom had to buy new gloves. They went missing too, but a year later I found my gloves in a pocket of the shorts I was wearing that day.

After all those days, I didn’t show anybody my hands and from that day forward everybody played with me if I didn’t show my hands. I hardly went on the monkey bars again so I played on Japanese bars instead but one day in Third grade, I was playing on the Japanese bars and I got a blister and this blister hurt. The next day I couldn’t play on the bars so I was bummed, but I could play handball with my cousin Brooke and my best friend, Katie.

Now sometimes I play on the monkey bars, handball and the Japanese bars but I still use my monkey bar gloves. Every day is a challenge for me to live with blisters on my hands I wish every night and day that if I could make one wish it would be to not have EB. I just want to be like the other kids. I know I don’t have it as bad as others, but living with EB sucks.”