Our Global EB Community Continues to Inspire Me

Lena Riedl avatar

by Lena Riedl |

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This month, I was once again impressed by how well connected the epidermolysis bullosa (EB) community is. I remember when I was younger, no such connection existed on social media like we have today.

Rare is many – but not always locally

As EB is a rare disease, only a few people may be living with the same condition in your area. It can be hard to find people your age with the same struggles to talk about. Also there are many different types of EB, so even though we live with the “same” condition, it is a little bit different for every individual.

However, I am lucky and got to meet others who have the same condition as I do. Through DEBRA Austria, a patient support group founded by my dad and other parents of so-called “butterfly children,” we get together at least once a year. We get to talk, connect, and support one another.

The impact of social media

The global connection provided by various social media sites has taken communication to a higher level. I now know people from all over the world who live with EB and share the daily struggles. I am now connected to people who have faced the same challenges I did, which is amazing. It is also easy to stay in touch with people I met at DEBRA congresses throughout the years. It has been a very enriching experience.

Enrichment through connection

What also strikes me is how amazing all of these people are. There is so much work to promote awareness going on, and much dedication to achieve acceptance and normalize scars, disability, and being “different.” This gives me strength and hope and makes me very proud. I’m proud to be a part of this strong, positive-minded community.

Meet the EB family

I would like to introduce you to others who are living with EB and continue to inspire me:







South Africa





Expressing gratitude

I am so grateful to know all of these people, as well as to have met most of them personally. Being connected with them and seeing how they are thriving with EB is priceless.

They don’t let EB stop them from doing what they want to do and what makes them happy. They continuously find a way to accept this condition as a part of who they are. There is so much support, empowerment, and love in this community, and for that I am grateful.

Looking at all of these beautiful, amazing people, I realize once more that even though we share a lot, we are all so different as well. That tells me that beauty has many different faces.


Note: Epidermolysis Bullosa Today 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 Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to epidermolysis bullosa.


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