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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.
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…
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…
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…
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…
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…
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…
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,…
“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…
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…
It is vital to take care of your body, especially when you live with a health condition. Otherwise, you might not be able to function or do the things you enjoy due to pain or other symptoms. Because I live with epidermolysis bullosa, a rare condition that causes my…
We all grow up with certain beliefs about ourselves. Sometimes we don’t even question them. Other times, we may realize we were wrong all along. Or, we may choose to hold on to them. If our beliefs are positive, they could help us along our way. If not, they could…
Many people living with rare disease often worry about health issues, government support, insurance, and being accepted by society. But we may also face minor, everyday problems. I was born with epidermolysis bullosa (EB), a rare condition that makes my skin and mucus membranes very fragile. With the wrong…
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