Epidermolysis Bullosa News Columns

September 28, 2021September 28, 2021

The Benefits of Writing a Monthly Column About EB

Epidermolysis Bullosa News Columns

In the spring of 2018, I was lucky enough to meet a member of the BioNews team (the parent company of Epidermolysis Bullosa News) at the European Conference on Rare Diseases ... Read more

September 9, 2021September 9, 2021

The Struggle of Heading Back to School

COVID-19 Columns, Epidermolysis Bullosa News Columns

Heading back to school has always been a bit rough for my son Jonah, who lives with junctional epidermolysis bullosa (EB). Now that he is a middle schooler, things seem ... Read more

August 31, 2021August 31, 2021

Learning to Embrace Uncertainty in All Aspects of Life

Epidermolysis Bullosa News Columns

I am in the middle of a big change. It feels like one season of my life is ending, and a new one is slowly beginning. I’m experiencing changes in ... Read more

August 5, 2021August 5, 2021

My Son Is Finding the Place Where He Belongs

Epidermolysis Bullosa News Columns

I think middle schoolers are a bunch of weirdos. I thought this even before Jonah, my son with junctional epidermolysis bullosa (EB), was a middle schooler himself. I have a ... Read more

August 3, 2021August 3, 2021

The Fine Line Between Finding Purpose With EB and Letting It Define Me

Epidermolysis Bullosa News Columns

I live with epidermolysis bullosa (EB), a rare skin condition that makes my skin as fragile as the wings of a butterfly. That’s why we are called “butterfly children.” I ... Read more

July 22, 2021July 22, 2021

Discerning Between Education and Self-preservation in Hard Moments

Epidermolysis Bullosa News Columns

I love Facebook‘s Memories feature. Although it can be a negative space, I do value it as a digital scrapbook for our family. Each day I open the app and ... Read more

July 8, 2021July 8, 2021

Doing Whatever It Takes to Make the Trip

Epidermolysis Bullosa News Columns

I’m avoiding packing. I have a two-page packing list with three columns per page staring up at me from my kitchen counter. I feel the printed pages mocking me as ... Read more

June 29, 2021June 29, 2021

What a Photo Shoot With Snakes Reminded Me About Skin

Epidermolysis Bullosa News Columns

The skin is the body’s largest organ, with a total surface area of about 22 square feet. The skin protects us from microbes and the elements, helps regulate body temperature, ... Read more

June 8, 2021June 8, 2021

Taking on New Challenges and Finding Ways to Do What I Love

Epidermolysis Bullosa News Columns

Last week, I tried something new, something I never thought I could do because of my condition. Many people told me I couldn’t do it, even though it’s a normal ... Read more

June 3, 2021June 3, 2021

Witnessing God’s Goodness in the Suffering

COVID-19 Columns, Epidermolysis Bullosa News Columns

Our son Jonah’s last day of sixth grade was last week. Like every kid, he brought home loads of papers, folders, and notebooks. And like every kid, he left the ... Read more

May 20, 2021May 20, 2021

Choose Kindness When Faced With Differences

Epidermolysis Bullosa News Columns

“Did a wolf attack your face?”  That’s what the preteen asked my son Jonah, who was born with junctional epidermolysis bullosa, when Jonah approached their group to play whiffle ball. ... Read more

May 6, 2021May 6, 2021

Overcoming the Bad Days and Finding Joy

Epidermolysis Bullosa News Columns

We have good days and bad days, and good weeks and bad weeks. Twelve years into our fight with epidermolysis bullosa, we’re pretty used to the ups and downs. But ... Read more

April 27, 2021April 27, 2021

I Want to See More Diversity in the Media

Epidermolysis Bullosa News Columns

This month, I want more diversity. I want to see more reality in the media and in advertisements and commercials. Show us real people who have stretch marks, scars, and ... Read more

April 22, 2021April 22, 2021

Jonah Is Fighting to Live Out His Baseball Dreams

Epidermolysis Bullosa News Columns

My son Jonah loves baseball. He watches almost every Atlanta Braves game on TV and looks at MLB highlights on YouTube every morning. He plays it on PlayStation 4, with ... Read more

April 13, 2021April 13, 2021

Our Global EB Community Continues to Inspire Me

Epidermolysis Bullosa News Columns

This month, I was once again impressed by how well connected the epidermolysis bullosa (EB) community is. I remember when I was younger, no such connection existed on social media ... Read more