Being born and living with E.B. is one heck of ride, never a dull moment. My inspiration for this book was my family, no matter what I’ve been through or what I’ve wanted to do in life, they have always been there for me. I am a young independent woman because my parents allowed me to find my own limitations. If i wanted to learn how to do something they would help me figure out how I could do it, some things took a little more creativity than others, but they never told me “no you can’t do that”.
Due to my E.B. my hands look like fists which makes it challenging to do certain tasks, but I love a good challenge. One of my passions is cooking, you should see me chop with my favorite 10″ chefs knife…lol. I do get blisters on some spots on my body and my skin is fragile which means I have to watch the physical activity I do, but I always try to find a way to do all the fun things in life. Like mini jeeping through the cliffs and on the beach in Cabo, (that was AWESOME!!) or riding the rollercoasters at Disneyland (my fav place).
I know I have E.B. and I need to be careful, but I am also a girl who loves living life and is going to make the best of it. So much more has happened in my life, a lot of good times and some dark times, but I would’nt trade my experiences for anything, they have made me who I am today.
I shared my story because it’s not just my story, it’s the story of every kid with E.B. We may have E.B., but E.B. doesnt have us. We are strong, confident and beautiful!! Experience life! Open that front door, take a step and enjoy the road trip of life.
E.B. Some Call It Epidermalysis Bullosa, I Call It Extraordinarily Beautiful by Derra Nicole Sabo
I am E.B….meaning that I was born with Epidermolysis Bullosa, the most beautiful and daunting game I have ever played. I am the overcast kid who lives life on the outside looking in. E.B. has made me a strong, eyes wide open to the world, grounded girl. With everything that I have been through, there’s one thing that I do at least once a day…laugh! It really is the best medicine, I mean come on, its not like I’ll make it out alive anyway…lol