August 2022

What does EB mean to me? 

To answer this, I must answer what it was, what it is now, and what it will be.

It was a happy childhood, one that people can’t quite believe was as happy as it was. It was an abundance of love pouring over me from my first steps. But it was also bandages from my toes to my fingers. It was my siblings going into the backyard because sometimes you could hear me scream from every room. It was days and weeks missing school when all I wanted to do was learn. It was discovering the power of my mind and the power my words could carry. It was writing in the car ride to the children’s hospital before surgery the next morning, where I’d start to cry behind an oxygen mask as anaesthetic forced my mind to still. It was saying the name of my condition and finally understanding what it meant.

It was a dozen surgeries in less than a decade, and fear, and an understanding that I had to do a lot more than other teenage girls. It was an understanding of society, crying in my car after a woman told me I looked like I’d been mauled by a gorilla. It was friends and my puppy and horse riding. It was pride after I saw my words carry me across countries, with pictures of my scars plastered in the Daily Mail and the Huffington Post as I boarded a flight for an education in London.

Now, I am 23 years older than I was meant to be. And here is what it is. It is my mother and boyfriend fighting back sleep from hospital chairs as they wait to hear if I made it out of the operation. It is watching my scar tissue overtake my fingers, and rites of passage I didn’t plan for. It is being interviewed by a Scottish journalist from my hospital bed, an IV dripping pain medicine into my arm and laughing at the ridiculousness of it all.

It is pointing and stares and bravery, exhaustion, and joy, in the same hour. It’s photographers pointing lenses at my scars and resisting the urge to cover myself, hide my soul from them. It is making decisions for the sake of my body with a knowledge that I may be hurting it. It is causing myself pain to heal. It is every ounce of my strength and more, it is words untranslatable, and fear and love and hope.

It is a part of me. It is the force that made me who I am. It’s why I sat down to write this for you. My name is Lucy Beall Lott and I have recessive dystrophic Epidermolysis Bullosa. I am a student, an art historian, an archaeologist, a sister, a daughter. And I have EB. I always have. But as we know, many things can change in just a short amount of time.

What will it be? What will I be? I used to think of my future and feel small. But instead of feeling overwhelmed by fear of the future, I am now overwhelmed by the excitement of possibility. There are so many things I now know are possible. It is possible to write a speech for a Ted Talk in bed with wounds across your body, it is possible to write two dissertations while your pinky fuses to your ring finger, it is possible to live not despite your condition but with it.

It is possible to see the beauty in the world, in scars and tears and pain. A future for people with EB is possible. We can see it. It is almost here. It will be possible for me to say, sometime soon, due to the research DEBRA is doing, that I am Lucy Beall Lott, and I HAD EB.

Lucy Beall Lott

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