That’s not a sunburn. He wanted to play ball with the guys at the church picnic. Such a simple desire, really. Except that it is July in St. Louis and he doesn’t sweat. He’s affected by the AEC syndrome of the ectodermal dysplasias, and along with that comes hypohidrosis, or the inability to sweat normally. Sweating is your body’s way of cooling itself off. He actually failed his sweat test when he was younger.
So, we take precautions. We pack cooling gear, including an evaporative towel, a cooling rag, plenty of water, etc. Even WITH a cooling rag and wetting his shirt multiple times, his core body temp rose to 102!
Sitting there watching him play was not easy. Knowing how hot I was getting, I just wanted to pull him off the field, ya know? But I was about his age when my Mom started letting me find my own limits. So, I let him play. And I irritated him by pouring water on him every chance I got.
Finally, when ALL of the guys decided to call the game because of the heat, he agreed it was hot. He wasn’t about to stop play before anyone else did.
I made him strip to his undies and sit in front of the AC when we got home, then let him take a tepid bath once his temp came down to 100. It took nearly an hour for his body temp to come back down to the typical level.
Being the Mom of a kid who can’t sweat, because of ectodermal dysplasia, can be challenging. Especially when that kid just wants to be “one of the guys.”
Today brought back memories of my sister and I vying for the best spot in front of the air conditioner on hot summer days, and it really gives me a new respect for what I put my Mom through when I insisted on running track and she swallowed her own fear to let me decide what my body could handle.
He said, “Man, it was VERY hot. But I scored, so I’d do it again.”
<3 him so much!
If you’d like to learn more about our skin disorder, check out nfed.org