My name is Anna, I'm 16 years old and I have EB Simplex/Dowling Meara. My EB was the worst for me when I was a baby and little girl. I was too young to remember the pain, and only really know what it was like through what my parents tell me.
Kids would ask me questions like "what happened to your leg?" or "Why do you have that boo boo on your arm?" I was afraid of those questions, but I couldn't blame them for their curiosity. It would take time for me to open up to my friends, but when I did, we became closer. I realized that my EB shouldn't stop me from forming friendships and being a kid. As I got older, the severity of my EB lessened and became barely noticeable, even to me. I'll get a blister here and there, and I still can't forget my sunscreen.
I learned to move past my shyness and became more confident, even if it did take a while. I'm currently a junior in high school, and I love anything that allows me to be creative, whether it be photography, art, or fashion. I'm a writer for the school newspaper, and I enjoy being with my peers and friends. When it comes to my future, I'm not sure where I will be. I hope to do something that involves helping others, because I love meeting new people and forming connections with them.
I admire the people with EB who strive to do what they want and not let anything stop them, I admire that strength in their spirit. I am thankful for my parents' love and care that they gave me when I was in pain. I am grateful to doctors who continue their research and devotion to find a cure. Seeing the stories of other kids with EB, the hours of bandaging, it brings a lot of emotion to me. I may not have endured as much pain as them, but they are strong minded and have ambition just like you and me, and that is the beauty of the butterfly children.