אחרים

How to Live when You're Meant to Die: Living with a Rare Disease

חסר תרגום בשפה עברית. מוצגת שפה אנגלית
מחלה נדירה & תסמונת

Lucy Beall Lott

I Have A Rare Disease Called Recessive Dystrophic Epidermolysis Bullosa Inversa

After I was born, my mother was told that I had a condition that would not allow me to live. I would surely die at eighteen, but in the meantime, my skin would be so fragile that my life would be spent in isolation. 

I have Recessive Dystrophic Epidermolysis Bullosa Inversa, a condition so rare that you have a greater chance of being struck by lightning than being born with it. It is a genetic condition, so you cannot catch it by being near me like so many seem to think. Due to a lack of collagen seven, the anchoring fibril that anchors your top layer of skin to your bottom layer of skin, my skin can be very fragile. It causes my body to erupt in open wounds and blisters that resemble burn wounds. And it is meant to get worse, not better.

An Eight Letter Word: Terminal

That is what I have always been told since I was too little to understand what "terminal" meant. I knew how to recite this word for people who asked me what my condition was, I knew how to spell it even, but as I continued to grow and live with this label, I finally understood what it meant. I was not supposed to be around- my condition was meant to kill me. So why was I still alive? How? 

After a series of throat surgeries I needed to save my life, I began to pursue my higher education. I moved countries from Texas to the UK and began studying in London at Sotheby's Institute of Art and Birkbeck College. I began to write about my experience with RDEB, to raise awareness. This awareness is what we need for a cure, a cure that may finally remove the "terminal" label that follows me. To my shock, people listened to what I had to say- my first article was published in the Huffington post before my eighteenth birthday. As I progressed in my life, accepting my offer at the University of St Andrews, I felt claustrophobic under the weight of the word "terminal".

I decided that although my words were important, to understand the effects of my condition people must see it for themselves, see my scars and therefore my life. So I began to model lingerie, much to my mother's joy.

I have since walked in a fashion show, will appear in Sophia Mayanne's Behind the Scars Project on Instagram and will be campaigning for Jeans for Genes- among many other exciting things. These shoots have appeared in publications such as The Daily Mail, The New York Post, The Mirror and many others. My scars have turned from something that brought me shame into something that brings me to hope daily- I am proud of them, I am honored to display my strength on my body. 

Every day I will continue to speak, to advocate and raise awareness until I never have to fear a birthday again. Soon I will be twenty-one. I want to further my career as an Art Historian and Classicist, I want to travel with my boyfriend and show my brother and sister the country I now call home. I want to live. And I have many more things to say in the meantime. 

Photo by Sophie Mayanne for her Behind the Scars project on Instagram

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