My awareness mission

Posted October 21, 2019

My name is Alexander VanHouten. I have Ehlers-Danlos syndrome, and though living with pain and constant threat of injury every day is no walk in the park, I am thankful for the trajectory my life has taken because of this disease.

When I was a child I was, like most young boys, a hyperactive, rambunctious little dude. My first ankle sprain was at age 3 while playing “airplane” with my mom (who also has EDS but wasn’t diagnosed until I was in my late teens. Fibromyalgia, rheumatoid arthritis, and degenerative disc disease were the labels until someone put it all together for her.) The doctor eyed her strangely suspecting possible abuse in the home: little did he know that that would be the first of 100 or more sprains, strains, and dislocations of my joints (ankle, wrist, shoulder, and hip) caused not by abuse, but by the combination of gravity, activity, and tendons and ligaments that act more like gummy bears than Kevlar.

I spent much of my young life constantly active (kickboxing, track, JROTC) and constantly injured. Truthfully I didn’t think much of it except that I settled into the pattern of being a normal kid, then getting injured, then healing, then getting back to my activities – then repeating the cycle again. Looking back though, there were some significant signs that, if I’d seen the right medical professional, or perhaps my momma had, would have clued someone in and helped me understand what I was going through.

Extremely flexible skin and joints, touching my nose with my tongue, severe and debilitating “growing pains” in my hips, knees and back through adolescents, and injuries unrelated to my active sports life (I mean, really, who sprains their ankle while making their bed?).

While I was becoming a young adult and dealing with the injuries, I also began my undergraduate studies at Vanderbilt University. Having always been an active and sports-minded person, I continued those habits into college. I played ultimate Frisbee, pick-up basketball, and even started training for a marathon all the while lifting weights, running, and rehabbing myself when sprains or strains inevitably came about. It turns out, you learn a lot about anatomy, kinesiology, biomechanics, and exercise programming when you have to rehabilitate yourself every few months, and after receiving multiple requests from classmates for training programs and exercise advice, I earned my Certification in Personal Training through the International Sports Science Association.

Training adaptations always seem to come harder to me than to others I met, but I didn’t dwell on it much. I found it powerful to make an impact and share the freedom and well-being of exercise and lifestyle change that I found for myself. No one likes being a caged bird. I graduated with a pre-med degree but ultimately decided to pursue my personal training career and passion.

It took a climbing accident to finally bring some clarity to my continued injury cycles and worsening digestive discomfort. A fall resulted in a severe ankle dislocation that I set onsite myself. Upon going in for the subsequent check-up, the x-ray revealed no damage to bone. The physician was amazed. He’d never encountered an ankle dislocation that didn’t result in some sort of fracture in the lower leg. He mentioned Ehlers-Danlos syndrome. I dismissed further investigation. I just wanted to know I had no broken bones so I could set about the rehab process that I had grown so accustomed to – and I certainly couldn’t afford the medical bills for the specialist he wanted to refer me to.

I spent the better part of the last 5 years wrestling with the suggested diagnosis of EDS both physically and mentally. I meet all of the criteria for classical EDS (cEDS), though through strength training I have significantly reduced the hypermobility of most of my joints.  I’ve also made it a goal of mine to compete on the show “American Ninja Warrior” despite the EDS that complicates my training and recovery. I hope that my success on AMNW and my personal training endeavors will make a ripple in bringing this disease to the public eye. Raising awareness, increasing understanding, and making lives better.

Together, as our frequent facebook LIVEs likes to say, we can DAZZLE!

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