Epidermolysis Bullosa News Columns

January 6, 2022January 6, 2022

Oral Surgery Becomes a Painful Nightmare for My Son

COVID-19 Columns, Epidermolysis Bullosa News Columns

My son Jonah, 12, had oral surgery on Dec. 22, which involved a simple extraction and some coating on his teeth to make them smoother. For most children, this probably ... Read more

December 14, 2021December 14, 2021

A Day in My Shoes: The Small, Everyday Problems of EB

Epidermolysis Bullosa News Columns

Many people living with rare disease often worry about health issues, government support, insurance, and being accepted by society. But we may also face minor, everyday problems. I was born ... Read more

November 18, 2021November 18, 2021

Remembering to Be Grateful in the Pain

Epidermolysis Bullosa News Columns

“Does he even know that it’s not normal?” my friend Trent asked. He was referring to the fact that my son Jonah, once again, was getting to do some ridiculous, ... Read more

November 4, 2021November 4, 2021

Living With EB Requires Some Creative Problem-solving

Epidermolysis Bullosa News Columns

My husband and I knew we would have problems to contend with after our son Jonah was born with epidermolysis bullosa (EB). We’d have to think about things like wound ... Read more

October 26, 2021October 26, 2021

Has Living With a Rare Skin Condition Helped Me Shed Old Habits?

Epidermolysis Bullosa News Columns

Growing up with a rare skin condition, such as epidermolysis bullosa (EB), gives a person a lot to worry about and tends to make them want to have control over ... Read more

October 25, 2021October 25, 2021

Slowing Down to Sit in the Suffering

Epidermolysis Bullosa News Columns

After more than 12 years of watching my son, Jonah, battle epidermolysis bullosa, and battling it myself as a caregiver, I have found myself becoming robotic, overly acclimated to our ... Read more

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