Columns

Rethink, Accept, and Appreciate Your Unique Self

I am finally back at BioNews and writing as “The Girl with the Butterfly Tattoo.” I can’t tell you how much I’ve missed writing. Due to the coronavirus and the craziness that was — well, still is — going on in the world, I had to stop writing my…

If You Are Struggling, Find Your Army

When my son Jonah was born with epidermolysis bullosa, saying it was a shock is a gross understatement. Unknowingly, my husband, Matt, and I each carried mutated genes that, when joined together, made for a monster disease that ravaged our sweet baby’s tender body.  Our first…

My Butterfly Baby

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…

I’m Learning to Be Proud of My Body

“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 My Body: Why Unsolicited Comments Can Be Hurtful

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…

All I Want for Christmas Is Everything I Already Have

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…