My condition, Recessive Dystrophic Epidermolysis Bullosa, is so rare that you have a greater chance of being struck by lightning than being born with it, and the life expectancy is just 18. I'm about to turn 21. So what happens now?
Recessive Dystrophic Epidermolysis Bullosa is a rare genetic and terminal condition caused by a lack of collagen number seven. This is the connecting fibril that anchors your epidermis to your dermis. As a result, my skin can be fragile and erupt in open wounds or blisters. Every aspect of my life has been touched in some way by EB. However, I am still active, have a career, am a full time student, have moved abroad and have wonderfully fulfilling relationships. While the chronic pain is a constant struggle, by far the biggest struggle for me is dealing with the stigmas which surround disability. Beyond my amazing team of specialists, who have helped me meet my goals despite EB, my mom has been the person I credit with my success. My mother is a single mom, and the amount of work she put into my care is truly astonishing. It is because of her that I am now independent and have self confidence.