I Look Forward to Telling My Epidermolysis Bullosa Story

I’ve been wanting to write about life with epidermolysis bullosa (EB) — my life as a so-called butterfly child — for a long time. But I never really knew how to start.

Then I was asked to write a column. I was flattered, but I had to start thinking and writing about EB. I’ve written many drafts over the past few years, but I didn’t actually know where to start now that I had a real chance to make my thoughts public. It took a lot of courage to record my thoughts and feelings, some of which I’d buried deep inside.

It took many months for me to finally publish my first column at Epidermolysis Bullosa News. It didn’t go according to plan. I always plan ahead, and if I think I won’t be successful or it won’t turn out as I planned, I won’t even start. But here I am. I published my first column and wrote about what I was thinking at the time. But now I think I should go back to my original plan and start with a short introduction.

Hey. My name is Lena, and I am 26. I’m from Vienna, Austria, and I live with EB.

(Courtesy of Leticia Pellicer)

EB is a rare genetic skin condition. I won’t get into the scientific, health stuff too much, as it’s not important for this column. What I will say is that my skin is very fragile. The slightest friction can cause my skin to blister and wounds to surface. So I must be careful with, well, everything.

There are different types of EB. Some people have severe forms of the disease, while others have EB that isn’t entirely visible. But this is my story. This column is about my life with EB. I want this column to be about life. About the challenges I faced, and the challenges I continue to face every day. It’s about being “different” in the eyes of some and “normal” in the eyes of others.

And it’s about all the good that having EB has brought me and taught me.

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Note: Epidermolysis Bullosa News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Epidermolysis Bullosa News or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to epidermolysis bullosa.