Epidermolysis Bullosa News Columns

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

April 8, 2021April 8, 2021

After Much Trial and Error, Here’s Our Best Bandaging Techniques

Epidermolysis Bullosa News Columns

Like with everything involving epidermolysis bullosa, finding the best bandage routine for our son Jonah, who was born with EB in 2009, has been a process of trial and error. ... Read more

March 18, 2021March 18, 2021

Reframing Broken Dreams About Family and Future

Epidermolysis Bullosa News Columns

Like many teenage girls, when I was younger I imagined what my future would look like. I pictured a wedding with a loving husband, a house with a white picket ... Read more

March 4, 2021March 4, 2021

A Letter to My Amazing Son Jonah on His 12th Birthday

Epidermolysis Bullosa News Columns

Dear Jonah, When you were born with epidermolysis bullosa, they told us there was an 85% chance you wouldn’t make it to your first birthday. But this past Saturday you ... Read more

February 26, 2021February 27, 2021

What ‘Rare’ Means to Me This Rare Disease Day

Epidermolysis Bullosa News Columns

A few days ago, a friend working in healthcare communications asked: “What does rare mean for you?” It got me thinking. I answered: “Rare is something special, something unique. Something ... Read more

February 18, 2021February 18, 2021

How We Began Educating Our Community About EB

Epidermolysis Bullosa News Columns

There are days when Jonah, my 11-year-old son with epidermolysis bullosa, and I feel like educating folks about his condition. And there are days when we don’t. When he was ... Read more