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 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,…

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…

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. It makes the disease sound…

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…

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. A new opportunity My boyfriend…

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…

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…

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…