Girl With the Butterfly Tattoo — Lena Riedl

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.

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…

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…

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…

“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…

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…

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…

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,…

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…

Growing up with a rare skin condition, such as epidermolysis bullosa (EB), gives a person a lot to worry about and tends to make them want to have control over their environment. Because my skin is missing a…

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,…