In most cases I don’t agree that “ignorance is bliss.” In general, the more information we have, the better people we are and the wiser our choices. But there are certainly some things I wish I didn’t have firsthand knowledge of. I wish I didn’t know how McDonald’s…
Columns
“People stare at you because you look different. How do you cope with that and why are you proud of the way you look?” This is what Klara Leschanz, a makeup artist and photographer living in Vienna, asked me last month while she was taking pictures of me for…
On Loving Yourself First
What better topic could there be to write about in February than love? Before I started writing this column, I asked what topics people might be interested in reading about. A few said love and relationships for someone living with a rare condition. So, this is what I will…
It’s annoying — yes, freaking annoying — when strangers and even acquaintances feel compelled to comment on another person’s appearance. I’ve heard comments like, “Your skin looks better than the last time,” or “Your skin is worse than before, right?” Others might mention an increase in weight or someone might…
When thinking of a topic for this column, I considered writing on a winter theme. But then, when I think of December, Christmas comes to mind, rather than the season’s cold weather. Christmas for me is family and friends, drinking hot cocoa, wrapped in warm blankets, wearing fluffy socks, and…
I’ve been wanting to write about life with epidermolysis bullosa (EB) — my life as a so-called butterfly child — for a long time. But I never really knew how to start. Then I was asked to write a column. I was flattered, but I had to start thinking and…
This is the first autumn I’m spending at home in Vienna after living in Marbella, Spain, for over a year. I was lucky to be in Spain for two summers — and when I say summer, I mean it starts in May and ends in November. But now I am…
Recent Posts
- Daring to dream isn’t something I allowed myself to do — until now
- Study finds high rates of antibiotic-resistant bacteria in EB wounds
- Epidermolysis bullosa is visible on the surface, but so much remains unseen
- Rare JEB case sees man survive into 80s despite long cancer history
- When epidermolysis bullosa dashes my false sense of security