I Look Forward to Telling My Epidermolysis Bullosa Story

I Look Forward to Telling My Epidermolysis Bullosa Story
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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.

columnist pic
(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.

My Name is Lena, I am 26 years old and was born with the rare, genetic skin condition Epidermolysis bullosa (EB). Those who live with EB are also called butterfly children. I work with DEBRA Austria, the organization that supports butterfly children in Austria and with another NGO which functions as an umbrella organization for rare diseases in Austria. I am a very outgoing, happy person. I love to be with family and friends, travel, sing, do sports, but I also enjoy being by myself, read, be creative. A few years ago, I was lucky enough to live in Spain, learn Spanish and fall in love with the country, the people and the language. I am a sun, beach and sea person and I love brunch. Writing is something that I love too, and with BioNews and my column The Girl with the Butterfly Tattoo I found the perfect way to combine doing something creative and finding a way to bring my thoughts and feelings into something I and others can better understand. And with every column I get closer to finding my true self and that is a very exciting adventure.
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My Name is Lena, I am 26 years old and was born with the rare, genetic skin condition Epidermolysis bullosa (EB). Those who live with EB are also called butterfly children. I work with DEBRA Austria, the organization that supports butterfly children in Austria and with another NGO which functions as an umbrella organization for rare diseases in Austria. I am a very outgoing, happy person. I love to be with family and friends, travel, sing, do sports, but I also enjoy being by myself, read, be creative. A few years ago, I was lucky enough to live in Spain, learn Spanish and fall in love with the country, the people and the language. I am a sun, beach and sea person and I love brunch. Writing is something that I love too, and with BioNews and my column The Girl with the Butterfly Tattoo I found the perfect way to combine doing something creative and finding a way to bring my thoughts and feelings into something I and others can better understand. And with every column I get closer to finding my true self and that is a very exciting adventure.
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6 comments

  1. Sharon Lowery says:

    I have suffered for many years. I assume I have a milder form but still painful. If my feet start generating heat I know I’m in trouble. Can’t get them cooled down fast enough. Can cripple you in a short period of time. Would love to know the best shoes to help prevent this from occurring. Bras and panties blister or pants that aren’t of stretch material. I feel for anyone that suffers from EB at any level. It runs in my family back 5 generations.

    • Lena Riedl says:

      Hey Sharon,

      thank you for your comment and please excuse my late reply!
      Nice to virtually meet you! 🙂

      I have learned that every body is different even if we all live with EB there is not only one solution that fits all.. but funny as it is, my go to shoes are converse (once they are worn-in). With bras and panties I never had any problems. But there is a group on Facebook for women with EB to ask question and exchange experiences and so on: https://www.facebook.com/groups/ebwomen?locale=de_DE

      Would love to hear from you again!
      All the best <3

  2. Cameron Skedd says:

    Hi guys,
    I’m in the same boat. Just one more challenge We all have to deal with I suppose.
    Question: has anyone gotten a tattoo?

    • Lena Riedl says:

      Hey Cameron,

      thanks for your comment.
      I do – I’ve got 9 tattoos so far.
      Feel free to message me if you have any more questions!

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