Author Archives: Lena Riedl

I Want to See More Diversity in the Media

This month, I want more diversity. I want to see more reality in the media and in advertisements and commercials. Show us real people who have stretch marks, scars, and imperfections, because that’s normal. Normalize different body types I want society to normalize different body types and to stop body…

Our Global EB Community Continues to Inspire Me

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…

What ‘Rare’ Means to Me This Rare Disease Day

A few days ago, a friend working in healthcare communications asked: “What does rare mean for you?” It got me thinking. I answered: “Rare is something special, something unique. Something that doesn’t exist very often. But also, it’s something you should not forget about, something you shouldn’t oversee. Are we…

Christmas Is the Season of Family, Love, and Harmony

I know, normally we associate love with February because of Valentine’s Day and all. I even wrote a column about love in February. But isn’t Christmas also a time of love? Love for our family, our loved ones, ourselves, and life in general. Everything should slow down. During Christmas,…

My Favorite Summer Dresses

It’s getting dark earlier, and it’s cold and gray where I live. The fallen leaves have lost their shades of yellow, red, and green, and are now a mélange of brown. Mist coats the rooftops of Vienna, muting and calming the shining Christmas lights. Change is coming. I must accept…

Say Hello to This Year’s Cover Model

This month, one of my childhood dreams came true. Ever since I was 15, I secretly wanted to be a model. But because I have scars on my body due to epidermolysis bullosa, my dream was hard to achieve. What is acceptance? I liked myself in pictures that were shot…

On Going That Extra Mile

Living with a rare disease, all I wanted my entire life was to be “normal” and to fit in. But I’ve since changed my mind. Not only have I learned to enjoy being “different” and thriving with epidermolysis bullosa (EB), but also I think I want to be more than…

Rethink, Accept, and Appreciate Your Unique Self

I am finally back at BioNews and writing as “The Girl with the Butterfly Tattoo.” I can’t tell you how much I’ve missed writing. Due to the coronavirus and the craziness that was — well, still is — going on in the world, I had to stop writing my…

I’m Learning to Be Proud of My Body

“People stare at you because you look different. How do you cope with that and why are you proud of the way you look?” This is what Klara Leschanz, a makeup artist and photographer living in Vienna, asked me last month while she was taking pictures of me for…