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.
One of the things that has helped me is to recognize that though I didn't get to choose my condition, I can choose what to do with my life. As a teenager, I hated the scars on my knees. I remember crying in the car to my mom outside Dairy Queen, telling her how much I hated my body. It was after that incident that I realized I needed to do something to spread awareness and fight back against the stigma EB causes.
As I started to work towards this goal, I gained confidence when I saw how much I had learned and how far my words could take me. After a woman in public told me that I looked like I had "been mauled by a gorilla" when I was seventeen, I began to write about my experiences. My first article was published on the Huffington Post before my eighteenth birthday. I have now completed a TedX talk and have many more plans in the future. After those experiences, I saw how my words could make a difference, and with the support of those who love me I decided to keep pushing myself. I have now begun modeling to raise awareness and draw attention to the stigmas surrounding disabilities.
Through it all, I have learned how truly strong I can be. I am amazed at what my body does to keep me alive: how it adapts and continues to sustain me. I am also continually amazed at how much hope I feel, even with a terminal diagnoses. When I look at my accomplishments, including attending university at St. Andrews, my Tedx Talk and working with Sophie Mayanne on her Behind the Scars project on Instagram, I feel proud and hopeful. I am also in the process of finishing a book about my experiences, which is very exciting.
People with chronic illnesses often talk about "acceptance." For me, this will always be a work in progress. Some days are better than others, and that's fine. What matters, I've learned, is always being kind to yourself. Though I accept the reality of my condition, I do not accept the circumstances surrounding my condition. I do not accept the lack of funding for a cure, the lack of awareness, and the stigmas.