Girl with the Butterfly Tattoo – a Column by Lena Riedl

Lena is a 26-year-old Austrian born with 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, do sports, eat brunch, read, and spend time in solitude — especially if near the sea.

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…

Our Global EB Community Continues to Inspire Me

This month, I was once again impressed by how well connected the epidermolysis bullosa (EB) community is. I remember when I was younger, no such connection existed on social media like we have today. Rare is many – but not always locally As EB is a rare disease, only a…

What ‘Rare’ Means to Me This Rare Disease Day

A few days ago, a friend working in healthcare communications asked: “What does rare mean for you?” It got me thinking. I answered: “Rare is something special, something unique. Something that doesn’t exist very often. But also, it’s something you should not forget about, something you shouldn’t oversee. Are we…

Christmas Is the Season of Family, Love, and Harmony

I know, normally we associate love with February because of Valentine’s Day and all. I even wrote a column about love in February. But isn’t Christmas also a time of love? Love for our family, our loved ones, ourselves, and life in general. Everything should slow down. During Christmas,…