My name is Derra Nicole and I was born with a rare disorder called Epidermolysis Bullosa or more easily known as EB. Life with EB is a crazy cool roller-coaster ride, filled with amazing good days and a few topsy-turvy days here and there. When I was born I spent two weeks in the Intensive Care Unit while doctors examined and studied what I may have. One doctor knew that my condition was Epidermolysis Bullosa and had seen only one prior case before me. After two weeks my mom was finally able to take me home and I began my life. My parents were superheroes, even though they both worked full-time, every night my mom cooked dinner and after would take an hour to two hours to bathe me and change all my bandages. When it was time for bed, my dad would come in and tell me the best stories as I would start to fall asleep.
Life with EB was pretty smooth sailing, then a few bumps in the road started to appear. At the age of four I had my first hand surgery at UCLA Hospital. The doctors decided to operate on both hands, separating my fingers from my palm and then from each other. When I came to in the recovery room, I had a cast on each arm, they went all the way to my shoulders. For eight weeks I looked like RoboCop! When the casts came off and another two months of healing passed, I was able to wiggle my fingers. At The age of eight I had a Throat Dialation up at Stanford’s Children’s Hospital. My throat was closing up during the nights which made it difficult to swallow. My mom tried having me sip hot tea or hot cocoa to hopefully open my throat, but when that stopped working, then came the surgery. Nothing but hot chicken broth, jello, ice cream and pudding for two weeks, every kids dream. Before I left the hospital ,my doctor instructed that I needed to stay away from chips, crackers and anything to crunchy (all the good foods) so that my throat wouldn’t become scarred up and possibly close up again. So I was a good girl and listened, until I found the loop hole…as long as I had a drink to sip on while enjoying the crunchier snacks I was okay, I just had to be careful. during all this I was in school. When my mom signed me up for school everyone wanted to put me into special education classes, but my mom wasn’t going for that. So when the teachers tested my education levels before entering !st grade, they were very surprised by my scores. I was actually two years ahead of my class in math and reading, so regular classes for me.
Kids did make fun of me, but I did have really good friends that always stuck up for me. I loved being in school and learning everything I could. As all this was going on, my fingers ended up fusing back together, so when I was 10 yrs old, it was back to Stanford for two more hand surgeries. It was a more painful recovery time from these surgeries though, the bandages always stuck to my hands and fingers, which made shower time very unpleasant. When my hands finally healed, I had to start wearing spacers in between my fingers and gloves on my hands. During the nights I had to wear braces, anything to keep my fingers from fusing again. I hated the spacers and gloves, so little by little I stopped wearing them and told my mom that I don’t care what my hands look like. I was able to write, draw and do almost everything everyone else could do, I didn’t want anymore hand surgeries, spacers, gloves or braces. This 10 yr old had enough of that. After that life went back to somewhat smooth sailing again. I loved school, went from being the only child to being the oldest of three kids (love my sis and bro) and just loving life. My junior year of High school I started loosing my vision, which sent me down a short trip down the river of denial. I knew that this meant more doctors and more surgeries. I had seen other doctors before when I was having a hard time seeing, but none of them knew what to do, I was losing hope. I figured that I was just going to live my life in a dark blurry state. Luckily my mom found an amazing doctor that knew about EB and was eager to help us. Dr. Seigel had a friend who was working on and experimental treatment that was perfect for my condition. My eyelids were fusing over my corneas which was causing the blindness. Dr. Song separated the lids from the corneas and then transplanted amniotic membrane tissue under my lids. The tissue is neutral which would help my lids to stay separate from my eyes. They did my left eye in May of 2002 and because the results were spectacular, they did my right eye in October. Two surgeries, multiple trips to Children’s Hospital in Los Angeles and eye drops, my world went from a dark haze to crystal clear. I still see Dr. Seigel twice a year to make sure everything is good and use drops twice a day to keep my eyes clear and healthy. Life was awesome!!!
I may have bandages on my legs and occasionally on my arms, my hands may look like fists and it may take an extra dose of creativity when accomplishing certain tasks, but I wouldn’t trade my life for anything. I love my family and friends, I love cooking in the kitchen, dancing, music, movies. I am a writer and an artist. I am strong, secure and not afraid to stand up for what i believe in. I love going to amusement parks, traveling and spending all day at the beach. Family BBQs and holiday parties are the best. Even girls day out and getting my hair done at the beauty salon. “I am an adventurer by fate, not by choice” – Vincent Van Gough…. EB is a major disorder to have, but its only a small part of who I am. My name is Derra and I am an Electric Butterfly!!