Austria-born Lena has the rare, genetic skin condition epidermolysis bullosa. She works with DEBRA Austria, an organization that supports “butterfly children,” and with another NGO which functions as an umbrella organization for rare diseases in Austria. She loves to be with family and friends, travel, sing, play sports, eat brunch, read, and spend time in solitude — especially if near the sea.This year, I want to say thank you. Thank you, 2020! I know that many will think, “Why ‘thank you’? Are you crazy?” But no — I just want to be happy. Many people were, or still are, hating on 2020. They wanted it to end so badly, as if…
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,…
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…
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…
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…
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…
“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…
What better topic could there be to write about in February than love? Before I started writing this column, I asked what topics people might be interested in reading about. A few said love and relationships for someone living with a rare condition. So, this is what I will…
It’s annoying — yes, freaking annoying — when strangers and even acquaintances feel compelled to comment on another person’s appearance. I’ve heard comments like, “Your skin looks better than the last time,” or “Your skin is worse than before, right?” Others might mention an increase in weight or someone might…
When thinking of a topic for this column, I considered writing on a winter theme. But then, when I think of December, Christmas comes to mind, rather than the season’s cold weather. Christmas for me is family and friends, drinking hot cocoa, wrapped in warm blankets, wearing fluffy socks, and…
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…
This is the first autumn I’m spending at home in Vienna after living in Marbella, Spain, for over a year. I was lucky to be in Spain for two summers — and when I say summer, I mean it starts in May and ends in November. But now I am…
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