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…
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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.
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.
Read moreThe 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…
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…
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…
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,…
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…
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,…
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,…
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…
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…
“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…
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…
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