Epidermolysis Bullosa News Columns

August 4, 2022August 4, 2022

When Special Needs Parenting Is Hard, Get Yourself a Clair

Every rare disease family needs a Clair. Jonah has had one since second grade. My friend Lauren is currently praying for one as she and her husband prepare to bring ... Read more

August 2, 2022August 2, 2022

How I Stay Safe During Summer Travel With Epidermolysis Bullosa

Epidermolysis Bullosa News Columns

With summer comes traveling again. For people living with a rare condition, traveling always requires significant preparation, as I discussed in my previous column. When I wrote it, I was ... Read more

July 7, 2022July 7, 2022

To Experience the Joys of Life, There Are Things We Must Consider

Epidermolysis Bullosa News Columns

Last week was our 19th annual “Cousin Camp” trip to the beach with my husband’s extended family. Thirty people attended, including 15 children ranging in age from 9 to 20 ... Read more

June 23, 2022June 23, 2022

Struggling With Epidermolysis Bullosa Amid the Summer Heat

Epidermolysis Bullosa News Columns

Last week in North Carolina, the feel-like temperature was 105 F. And this week has been in the mid-90s. It’s this hot already, and it’s only mid-June. That’s hot for ... Read more

June 9, 2022June 9, 2022

Watching My Son Deal With the Never-ending Pain of EB

Epidermolysis Bullosa News Columns

I heard my son Jonah sigh as he sat in the stadium seat beside me at Friday night’s minor league baseball game in our hometown. It was his pain sigh. ... Read more

June 9, 2022June 21, 2022

Watching My Son Deal With the Never-ending Pain of EB

Epidermolysis Bullosa News Columns

I heard my son Jonah sigh as he sat in the stadium seat beside me at Friday night’s minor league baseball game in our hometown. It was his pain sigh. ... Read more

June 8, 2022June 21, 2022

When Traveling With a Skin Condition Like EB, Preparation Is Key

COVID-19 Columns, Epidermolysis Bullosa News Columns

“A journey of a thousand miles begins with a single step.” – Laotzu I just finished packing my bags for my first flight in more than two years. (Yay, we ... Read more

June 8, 2022June 8, 2022

When Traveling With a Skin Condition Like EB, Preparation Is Key

COVID-19 Columns, Epidermolysis Bullosa News Columns

“A journey of a thousand miles begins with a single step.” – Laotzu I just finished packing my bags for my first flight in more than two years. (Yay, we ... Read more

May 5, 2022June 21, 2022

Put Courage Into Those Facing Hard Battles

Epidermolysis Bullosa News Columns

I have had two friends in the last three months give birth to premature babies. The first, Izzy, was born six weeks early with a genetic condition called DiGeorge syndrome ... Read more

May 5, 2022May 5, 2022

Put Courage Into Those Facing Hard Battles

Epidermolysis Bullosa News Columns

I have had two friends in the last three months give birth to premature babies. The first, Izzy, was born six weeks early with a genetic condition called DiGeorge syndrome ... Read more

April 26, 2022June 21, 2022

Finding the Purpose of My Column

Epidermolysis Bullosa News Columns

You never know what will happen between waking up and the end of the day. That’s part of life. But waking up knowing that you might come home after a ... Read more

April 26, 2022April 26, 2022

Finding the Purpose of My Column

Epidermolysis Bullosa News Columns

You never know what will happen between waking up and the end of the day. That’s part of life. But waking up knowing that you might come home after a ... Read more

April 21, 2022June 21, 2022

Life Is Hard, but We Choose Joy Anyway

Epidermolysis Bullosa News Columns

On Saturday night at 10 p.m., when we were exhausted and had spent the entire day at the baseball field, I got an idea — or a bee in my ... Read more

April 21, 2022April 21, 2022

Life Is Hard, but We Choose Joy Anyway

Epidermolysis Bullosa News Columns

On Saturday night at 10 p.m., when we were exhausted and had spent the entire day at the baseball field, I got an idea — or a bee in my ... Read more

April 7, 2022June 21, 2022

Remembering to Anticipate the Good

COVID-19 Columns, Epidermolysis Bullosa News Columns

“Dilly Dilly!” Jonah said as he drank yet another virgin strawberry daiquiri. “Do we have these in America?” he asked with pink-tinged lips, looking hopeful. He finished, yanked off his ... Read more