Epidermolysis Bullosa News Columns

December 3, 2020December 3, 2020

A Few of Our Favorite Things

Epidermolysis Bullosa News Columns

Oprah recently released her Favorite Things 2020 list, and it got me thinking of my own favorites list. What are some of the things that have made our lives a ... Read more

December 1, 2020December 1, 2020

My Favorite Summer Dresses

Epidermolysis Bullosa News Columns

It’s getting dark earlier, and it’s cold and gray where I live. The fallen leaves have lost their shades of yellow, red, and green, and are now a mélange of ... Read more

November 19, 2020November 19, 2020

When EB Steals Your Cat

Epidermolysis Bullosa News Columns

My mom got an adorable kitten last weekend. When I showed my boys the sweet picture she texted us, Jonah questioned me about our cat that we re-homed when he ... Read more

November 5, 2020November 5, 2020

The Difficult Decision in Favor of a Feeding Tube, Part 2

Epidermolysis Bullosa News Columns

Last in a series. Read part one. After our son Jonah was born with junctional epidermolysis bullosa, we made the difficult decision for him to get a gastrostomy feeding tube. ... Read more

October 27, 2020October 27, 2020

Say Hello to This Year’s Cover Model

Epidermolysis Bullosa News Columns

This month, one of my childhood dreams came true. Ever since I was 15, I secretly wanted to be a model. But because I have scars on my body due ... Read more

October 22, 2020October 22, 2020

The Difficult Decision in Favor of a Feeding Tube, Part 1

Epidermolysis Bullosa News Columns

First in a two-part series. Our son Jonah, who was born with junctional epidermolysis bullosa in 2009, struggled to eat from the beginning. It was one of the main reasons ... Read more

October 8, 2020October 8, 2020

Interview With the Butterfly, Part 2

Epidermolysis Bullosa News Columns

Last in a series. Read part one.  I continued an interview this week with my son Jonah, who is 11 and was born with junctional epidermolysis bullosa (EB), after we ... Read more

October 6, 2020October 6, 2020

On Going That Extra Mile

Epidermolysis Bullosa News Columns

Living with a rare disease, all I wanted my entire life was to be “normal” and to fit in. But I’ve since changed my mind. Not only have I learned ... Read more

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