Girl with the Butterfly Tattoo – a Column by Lena Riedl

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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.

Winter is coming, and I feel it in my painful skin

I’ll always feel when the seasons are changing by the way my skin reacts. Here in Vienna, autumn is slowly coming to an end and winter is coming, slowly crawling into our smallest crevices. I not only recognize winter when it gets darker outside and the temperature drops, but I…

Giving my body a rest while relaxing at the beach

My life has been crazy lately, in good and bad ways. I’ve confronted many challenges and felt like I’d reached my limit in certain areas. I even lost focus, forgetting to do things that make me happy and boost my confidence, such as playing sports. I also experienced moments…

Who gets to decide if I have to be careful or carefree?

I recently wondered why we who live with rare conditions often get told how to feel. I’ve experienced this instruction in many different situations. When strangers see me with my scars and bandages, many tell me, “Oh, no, it must be so awful living with your disease. Your life must…

How I Stay Safe During Summer Travel With Epidermolysis Bullosa

With summer comes traveling again. For people living with a rare condition, traveling always requires significant preparation, as I discussed in my previous column. When I wrote it, I was busy packing for summer vacation. I packed my beach towel, bikinis, sunglasses — and wound dressings, bandages, needles,…

Finding the Purpose of My Column

You never know what will happen between waking up and the end of the day. That’s part of life. But waking up knowing that you might come home after a long day and have new wounds and blisters and be unable to walk any farther is something most people cannot…