Epidermolysis Bullosa News Columns

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

February 4, 2021February 4, 2021

Fighting for Insurance to Cover My Son’s Lifesaving Bandages

Epidermolysis Bullosa News Columns

Jonah, my 11-year-old son who has epidermolysis bullosa (EB), is wounded from head to toe and must be covered in lifesaving bandages every single day. These bandages not only cover ... Read more

February 2, 2021February 2, 2021

By Focusing on What I Can Control, I’m Finding the Good in 2020

COVID-19 Columns, Epidermolysis Bullosa News Columns

This year, I want to say thank you. Thank you, 2020! I know that many will think, “Why ‘thank you’? Are you crazy?” But no — I just want to ... Read more

January 21, 2021January 21, 2021

Trudging Through Difficult Days With Corneal Abrasions

Epidermolysis Bullosa News Columns

In another bummer turn of events, my 11-year-old son Jonah woke up on Sunday morning with a corneal abrasion. These, and the types of blisters he experienced on Christmas, are ... Read more

January 7, 2021January 7, 2021

Wrestling With the ‘Why’ When My Son Is in Pain

COVID-19 Columns, Epidermolysis Bullosa News Columns

Our Christmas started out like most people’s. Well, sort of. We, like many, kept it small this year. On Christmas Eve, we did bath and bandage change in the afternoon. ... Read more

December 22, 2020December 22, 2020

Christmas Is the Season of Family, Love, and Harmony

Epidermolysis Bullosa News Columns

I know, normally we associate love with February because of Valentine’s Day and all. I even wrote a column about love in February. But isn’t Christmas also a time of ... Read more

December 17, 2020December 17, 2020

In Social Situations, I’m Learning How to Stretch

Epidermolysis Bullosa News Columns

I am an extrovert by nature. Most of my life I have gotten my energy from being around other people. I value others’ opinions, points of view, camaraderie, and comfort. ... Read more