I was diagnosed with Epidermolysis Bullosa Simplex Localized (formerly known as Weber-Cockayne) as a young baby at the University of Washington Children's Hospital. I was always involved in sports growing up. I played tackle football, tennis, soccer, basketball, boy's baseball and softball. In high school, I was a 3-sport athlete competing in soccer, basketball, and softball.
I remember coming home from games or practices where I hid the pain from my coaches and teammates because I didn't want them to know about my EB. My mom would help me peel off layers of skin from my hands and feet. I was in tears from the pain, having to soak them right away. Dealing with the pain of my EB has been challenging and not wanting people to know in fear of being seen differently. I hid it from everyone around me because I didn't want to be treated differently. It was also challenging to try to explain to doctors or nurses about EB because not many had heard of it.
I went on to play college softball and still compete in high level slow-pitch. Today, I am proud to be a Physical Education Teacher teaching pre-K-8th grade and sharing my love and passion of sport with children. My EB still affects me daily, but I don't hide it anymore and I am proud of who I am.
Something that I wish that people would know about EB is that no matter what type of EB we have, we are special and brave! That each day presents a challenge not many have or can explain but it is just a hurdle we bravely jump, wanting others to be informed of what EB can do.
I follow debra of America on Facebook and have followed along as my mother followed throughout life wanting to meet others like me. I have never met anyone with EB, and I would love to meet others and share triumphs and struggles. As a teacher, I love to teach and embrace learning from others knowing we can all learn from each other. It has helped to see that there are others out there like me; others who smile every day in the worst cases of EB because of the support from debra.
- Nicole Ramsey