Girl With the Butterfly Tattoo — Lena Riedl

Girl with the Butterfly Tattoo
Austria-born Lena Riedl was born with the rare, genetic skin condition epidermolysis bullosa. She was diagnosed with this condition a few months after she was born, but received a completed diagnosis with the EB subtype recessive dystrophic EB only years after. She works with DEBRA Austria, an organization that supports “butterfly children,” as a patient advocate and in a public relations agency in Vienna, Austria. She loves to be with family and friends and her dog as well as travel, sing, play sports, eat brunch, read, and spend time 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…

Columns

The pressure of turning 30 and how I’ve relieved it

The year 2023 has been full of new beginnings and big adventures, including turning 30 last month. But that’s made me feel pressure. I felt I had to reach certain standards and goals as I said goodbye to my 20s. I didn’t feel I was where I should be for…

Columns

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…

Columns

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…

Columns

Sometimes my body has to remind me that I live with a rare disease

Occasionally, I forget that I live with a rare disease. For me, that’s a good thing. It means I’m doing well enough that my condition doesn’t bother me on a day-to-day basis. But sometimes, my body will say, “Hey, stop! You have a condition to consider. You need to take…

Columns

Moving forward with a new home, job, and chance to be proud

As we settle into 2023, I’m thinking about my usual preference to remain in my comfort zone rather than taking risks. I have always been afraid of change, but this time, I’ve decided to leave excuses behind. Life has presented me so many opportunities, and my gut told me…

Columns

Dating With a Chronic Illness Brings Unique Challenges, Considerations

I’m currently rewatching the “Sex and the City” TV series for the third or fourth time. Now that I’m closer in age to the main characters, I relate even more to their feelings, thoughts, and struggles regarding dating. While the women face various insecurities, I think I can add…

Columns

For My Birthday, I Accomplished Something That Made Me Proud

Last week, I turned 29. And for the first time, turning a year older made me think. We often hear people say, “By the time I turn 30, I want to have achieved X, Y, and Z.” I never put a time frame on my goals. But now that 30…

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I’m Learning How to Not Be Hard on Myself When Injuries Happen

While I speak openly about the everyday problems I face while living with epidermolysis bullosa, or how I wish society would view us differently and end the stigma around disabled people, I rarely discuss those really hard moments I have with my skin. This is because at…

Columns

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,…

Columns

When Traveling With a Skin Condition Like EB, Preparation Is Key

“A journey of a thousand miles begins with a single step.” – Laotzu I just finished packing my bags for my first flight in more than two years. (Yay, we can travel again!) But while a trip may begin with a single step for some, traveling requires many more steps…

Columns

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…