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…
Columns
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
- Manufacturing process now in gear for producing treatment for fragile skin
- With my son taking the lead on his EB care, I feel hopeful for his future
- Overcoming employment challenges with epidermolysis bullosa
- New company launches to advance potential treatment for DEB
- Use of vitamin A-based drug stops blistering of young girl’s fragile skin