Epidermolysis Bullosa News Columns

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

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