How We Began Educating Our Community About EB

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 younger, I would intercept the stares, block him with my body, and do the educating myself. These days, he’s too smart for my block attempts, and feels the stares just as much as I do. Sometimes they are accompanied by a kind smile. Often they are not. Once in a while, the hard looks come with hard words as well. Sometimes he will speak up, but sometimes he chooses to walk away.

Both responses are OK, as he has freedom to feel what he feels. But both of us agree that the more people who know about EB, the better. Many EB families deal with rude comments, accusations of child abuse, or minimally, get dirty looks in public, with many people thinking this “skin thing” is contagious. 

With Rare Disease Day coming up on Feb. 28, I wanted to share a confrontation-free way to educate about EB (or whatever your rarity may be). We tried this when Jonah was young, although we did it for EB Awareness Week in October. We were about to go trick-or-treating for the first time around our neighborhood, and I just couldn’t handle the thought of that many questions and weird looks. 

I wrote and printed up copies of a letter that is similar to the one that follows, and then stuffed them behind the mailbox flags of the 100 homes closest to ours. 

Jonah, at 18 months old, plays in his living room. (Courtesy of Patrice Williams)

Hello Friends and Neighbors, 

My name is Jonah, and I am 20 months old.

Mommy wanted me to let you know that Rare Disease Day is coming up. I have EB, which is very rare. EB stands for epidermolysis bullosa. It’s the skin disorder that I have. EB is a genetic disorder with no cure. We all have proteins that hold our skin together, but I’m missing one (called collagen XVII), which means my skin is really fragile, like a butterfly’s wings. 

My skin blisters or shears off with any sort of friction. I have to stay bandaged from my neck down to protect me. Tags on clothes, seams, regular diapers, a rub of my face with my hand — anything like that can cause my skin to blister or tear. EB also affects my fingernails, hair, and teeth. There can be internal problems, such as blistering and scarring in the esophagus, trachea, or intestines. My biggest risk is getting an infection in one of my wounds, but Mommy and Daddy work hard to keep me safe. I get a bath and my bandages changed every day.

I was born on Feb. 27, 2009, and Mommy and Daddy had no idea there was going to be a problem. But when I was born, I was in bad shape. I was missing the skin from my elbows down and my knees down, and had other blisters and wounds all over.

Jonah, in the NICU, is wrapped in gauze used for burn victims. (Courtesy of Patrice Williams)

My type of EB — junctional epidermolysis bullosa — is recessive, so Mommy and Daddy each have a faulty gene they didn’t know about that they passed on to me. I spent 32 days in the NICU, and only about 20% of babies with my type make it to their first birthday. But I’m almost 2 years old and doing great!

If you’d like to learn more about epidermolysis bullosa, please visit EpidermolysisBullosaNews.com, debra.org, or ebmrf.org. 

Mommy just wanted you to get to know me and learn about my disorder. She and Daddy hope you’ll speak and wave to me when you see me. I’m not contagious, and I’m just about the sweetest thing in the world, according to Mommy, anyway. So, if you see a little boy with boo-boos on his face around the neighborhood, we’d love for you to say hi. There’s nothing to be afraid of. It’s just me: beautiful, perfect, just-right Jonah (that was Mommy’s input again).

Thanks for taking the time to read this note. We love our neighborhood and hope to get to meet you soon!

Love,
Jonah

Jonah, at 16 months old, enjoys the beach. (Courtesy of Patrice Williams)

The response to our letter was awesome. When we went trick-or-treating later that week, folks made Jonah feel extra special, and several houses had big bags of candy wrapped up just for him. They didn’t know he didn’t eat, so Matt and I got a special bonus for all our awareness work — TWIX for days!

I highly recommend this type of education piece. It was low cost, low emotional burden, and went a long way to make us comfortable in our neighborhood. We have learned that prepping folks ahead of time for a dose of different has high-yield results in terms of lowering our anxiety and increasing Jonah’s social success. Plus, people learn about EB, so everyone wins!

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Note: Epidermolysis Bullosa Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Epidermolysis Bullosa Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to epidermolysis bullosa.