Girl With the Butterfly Tattoo — Lena Riedl

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…

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.

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…

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…

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…

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…

I live with epidermolysis bullosa (EB), a rare skin condition that makes my skin as fragile as the wings of a butterfly. That’s why we are called “butterfly children.” I like that name.

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…

Last week, I tried something new, something I never thought I could do because of my condition. Many people told me I couldn’t do it, even though it’s a normal experience for most people.

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.

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.

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…