Struggling With Epidermolysis Bullosa Amid the Summer Heat

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by Patrice Williams |

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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 anyone, but for someone with epidermolysis bullosa (EB) like my son Jonah, it’s almost unbearable.

Imagine going out in that kind of heat in a snowsuit, and you’ll have an idea of what fully bandaged EB kids experience during the summer months in their three layers of bandages. Where we live, these “summer” months extend from May to early October.

Not only does the heat make him feel hot, but it also increases the fragility of his skin. Though it’s not a typical problem area for us, he’s getting blisters right now regularly under his armpits, due only to the movement between his arms and his torso. It’s the same for other areas of his body, many of them hard-to-bandage places.

In addition to increased fragility, heat can’t escape his body. The purpose of sweating is to cool the body as the sweat evaporates. Jonah’s bandages don’t allow his sweat to evaporate, so heat stays trapped against his body. It’s incredibly difficult for him to cool down. We have to watch very closely for signs of heat-related emergencies.

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

And on top of all of that, it’s just plain miserable. For him, because it’s another level of suffering. For me, because I can’t go five minutes without offering him more water, a neck fan, a cooling gaiter, or telling him to get in the shade. You can imagine how my high-strung, over-mothering insistence goes over with my teenager. (There was definitely a moment at our last baseball tournament when he not-so-lovingly looked at me and said, “STOP talking to me about this. I said I’m fine.”)

It was fine. I was fine. Everything was fine.

Because of the heat, summer can be a difficult time. Jonah would still say it’s his favorite time of the year because there’s no school or homework and he doesn’t have to get up early. But it also means days stuck inside and lots of screen time. Which Jonah would also argue is not a bad thing. I, on the other hand, worry about my children getting dumber with each minute of watching YouTube or TikTok. “Can’t you find something educational to watch?” (Insert Jonah eye roll here.)

So while his friends are at camp or playing sports, Jonah’s stuck inside. Indoor camps like art, drama, or music hold zero interest for him. And he doesn’t want to be where he doesn’t know anyone. In new environments, he’s plagued with stares and questions, curious minds needing to know, “What happened to you?”

Even the pool is hard, because we have to make sure we time swimming with a dressing change day. Jonah swims in his bandages, so he can only go on days he has a nurse who knows how to do a dressing change, and at least a five-hour window — enough time to travel, swim, and do dressing change. And even then, he’s swimming in the pools at his grandmother’s townhome. He’s not with friends.

summer heat | Epidermolysis Bullosa News | Jonah smiles for a photo indoors with his two small dogs.

Jonah and his two dogs hang out inside on a recent hot summer day. (Courtesy of Patrice Williams)

It takes some creativity and out-of-the-box thinking to make Jonah’s summer feel somewhat special. When he was little, we could come up with activities — creating art together, bowling, a kids’ summer movie, carving out time to swim and do bandages. But now he wants to be with his friends. Mom, Granny, or his nurses just don’t cut it like they used to, socially speaking.

Unfortunately, his friends are at camp or their community pool with the neighborhood friends, while Jonah is stuck indoors, watching silly TikTok videos and playing video games. If I make him, he’ll read for 30 minutes or so. And sometimes he’ll agree to the occasional game of Scattergories. But being a teenager and not being able to spend the summer outdoors is tough, mentally, physically, and socially. And as his mom, it causes me a lot of anxiety.

Why aren’t his friends inviting him over?

What if he and his little brother actually kill each other in the next two and a half months?

Are screens killing his brain cells and ruining his development?

Are his muscles atrophying as we speak?

Obviously, I’m superchill and laid-back and don’t get carried away at all.

Maybe for some it’s just a hot day. But for others, it feels impossible.

For those able to sit by the pool, visit an amusement park, attend camp, or enjoy weekends on the lake, keep in mind that there are many families (likely in your social sphere) who don’t have it as easy. Do what you can to include them, invite them, and make them feel “normal.” The kids need it. And so do their parents.


Note: Epidermolysis Bullosa News 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 News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to epidermolysis bullosa.

Comments

Annette Fenwick avatar

Annette Fenwick

Thank you Patrice for your article on your family. It made me smile yet I can understand your anxiety in wanting to ensure Noah will be fine.

I hope you can be encouraged in knowing there are people around the world who are praying and thinking of you and your family.
Love Annette

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