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.

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…

I No Longer View Self-care as a Chore

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…

So, Can I Still Become the Next Ana Ivanović?

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…

A Day in My Shoes: The Small, Everyday Problems of EB

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…

The Benefits of Writing a Monthly Column About EB

In the spring of 2018, I was lucky enough to meet a member of the BioNews team (the parent company of Epidermolysis Bullosa News) at the European Conference on Rare Diseases and Orphan Products in Vienna. Brad, the director of columns, asked me if I was interested in…

Learning to Embrace Uncertainty in All Aspects of Life

I am in the middle of a big change. It feels like one season of my life is ending, and a new one is slowly beginning. I’m experiencing changes in scenery, people, job, and mindset. I’m ready for something new. But these changes involve a lot of uncertainty, which is…

What a Photo Shoot With Snakes Reminded Me About Skin

The skin is the body’s largest organ, with a total surface area of about 22 square feet. The skin protects us from microbes and the elements, helps regulate body temperature, and permits the sensations of touch, heat, and cold. In my case, my skin is “special.” I live with…

I Want to See More Diversity in the Media

This month, I want more diversity. I want to see more reality in the media and in advertisements and commercials. Show us real people who have stretch marks, scars, and imperfections, because that’s normal. Normalize different body types I want society to normalize different body types and to stop body…