Epidermolysis Bullosa News Columns

September 17, 2020September 17, 2020

Interview With the Butterfly, Part 1

Epidermolysis Bullosa News Columns

First in a series. My son Jonah was born with junctional epidermolysis bullosa in 2009. He is now 11 and in the sixth grade. I am honored to write this column ... Read more

September 3, 2020September 3, 2020

Focusing on the Manna for Today

Epidermolysis Bullosa News Columns

Our son, Jonah, is 11 years old now and just began the sixth grade. It blows my mind to think that it has been 11 years since our journey with ... Read more

September 1, 2020September 1, 2020

Rethink, Accept, and Appreciate Your Unique Self

Epidermolysis Bullosa News Columns

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 ... Read more

August 20, 2020August 20, 2020

If You Are Struggling, Find Your Army

Epidermolysis Bullosa News Columns

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 ... Read more

August 6, 2020August 6, 2020

Choosing Between Bad and Worse, I Learned to Become an Advocate

Epidermolysis Bullosa News Columns

The scariest thing about a rare disease is that nobody has the answers you’re desperately seeking. When you are facing something so unfamiliar and the people who are supposed to ... Read more

July 23, 2020July 23, 2020

My Butterfly Baby

Epidermolysis Bullosa News Columns

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 ... Read more

February 18, 2020May 6, 2020

On Loving Yourself First

Epidermolysis Bullosa News Columns

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. ... Read more

January 21, 2020May 6, 2020

It’s My Body: Why Unsolicited Comments Can Be Hurtful

Epidermolysis Bullosa News 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 ... Read more

December 17, 2019May 6, 2020

All I Want for Christmas Is Everything I Already Have

Epidermolysis Bullosa News Columns

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 ... Read more

November 19, 2019May 6, 2020

I Look Forward to Telling My Epidermolysis Bullosa Story

Epidermolysis Bullosa News Columns

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 ... Read more

October 22, 2019May 6, 2020

With the End of Summer, I’m Starting A New Phase of My Life

Epidermolysis Bullosa News Columns

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 ... Read more