The Tricky Crossroads of My Son's Ehlers-Danlos Syndrome and Sports

My son Michael is an active, athletic 11-year-old who loves sports. He also happens to have Ehlers-Danlos syndrome hypermobility type. And it’s at the crossroads of sports and EDS where things get complicated.

• What is Ehlers-Danlos Syndrome?
• What Are Common Ehlers-Danlos Syndrome Symptoms?

Michael has experienced a handful of injuries playing sports – some serious (like a torn meniscus and ACL in a baseball game) and some not so interesting (like a finger sprain playing flag football). We are lucky enough to live close enough to New York City that Michael is cared for by some of the top orthopedists in the country at Hospital for Special Surgery. These doctors tell Michael to take precautions like wearing a knee brace while he plays sports, and they discourage sports like soccer and tackle football, where he’s more likely to re-tear his ACL. But they continue to encourage him to play the other sports he loves and to stay active.

For whatever reason, Michael has always gotten hurt more than the average kid. Some of these injuries we can likely attribute to the hyperflexible joints that result from EDS – he’s had sprained ankles, wrists and fingers. But other injuries… who knows? He once tripped over a branch and broke his fall by smacking his forehead on a tree. He’s been hit by pitches in baseball games multiple times. One pitch hit him on the elbow and on the back and left bruises in both spots. As far as I’m concerned, that defies the laws of physics and has nothing to do with any diagnosis Michael might have.

So, here’s where it gets complicated for me. Because Michael has always been somewhat injury prone, we can’t always tell what’s serious and what isn’t. Let’s face it – if  you’re a kid who has been through two knee surgeries, more than a year of physical therapy, months on crutches, and time with other body parts in splints and braces, you’re going to be worried that every injury is a bad one. And as Michael’s mom, I worry too.

Now, any time Michael gets hurt, our internal alarms all go off. And unfortunately, none of us can tell anymore whether or not it’s a false alarm – even Michael. In a recent basketball game, Michael tripped over an opponent and fell on his right arm. He got up, holding his arm; the coach took him out, and Michael spent the rest of the game on the bench. I resisted the urge to run over to see if he was okay, and waited a quarter before I went to take a closer look at him. He said he couldn’t move his arm, and I mentally began mapping out where we could head to get him checked out, while we waited for the end of the game.

By the time the game was over, Michael could move his arm a little, and by morning, it felt significantly better. Since then, he’s been playing basketball and living his life, but every now and then, he tells us his arm is bothering him. Is it just pain from overuse, typical for EDS patients? Or something more serious?

And for now, this is our life. As a mom, I spend more time than I wish I did worrying about the next injury and trying to figure out whether or not something is a false alarm. And I spend time trying to allay Michael’s fears that any injury he does get is going to be season-ending; as a 6th grader, he’s already had two of those injuries, so unfortunately, that’s not an unrealistic fear for him.

But in the meantime, we do our best to take the precautions we can to keep him safe, and just let him go out into the world to be a kid.

Thinkstock photo by Banana Stock