June 5, 2018
June is Men’s Health Month—and The Ehlers-Danlos Society is taking the opportunity to spread the word that men get Ehlers-Danlos syndromes and hypermobility spectrum disorders, too.
Although EDS and HSD are seen more often in women than in men, the research is clear. Men can and do endure EDS, HSD, and myriad related disorders. And, even though EDS/HSD are underdiagnosed, they can be just as severe and debilitating in men as they are in women. These men deserve visibility, care, and support.
Hope for a clear diagnosis
“There are questions regarding what class of EDS I would most accurately fall under: For one, my form of it manifested internally, affecting the organs, before I began exhibiting the typical symptoms that have come to be associated with the more common types. There is also no family history of connective tissue disease, as far as we know. And, despite the negative results for vascular type, my history with internal bleeding still suggested some degree of vascular fragility. To this day, the diagnosis is vague and indefinite… 2018 will mark the next milestone in my EDS journey as I will finally be meeting with another household name in the EDS community, Dr. Clair Francomano.”
– Caleb Habron
Pop, Snap, and the long journey to diagnosis
“Throughout my life my hands have ached and popped. As a teenager I developed the very bad habit of cracking my knuckles for relief. I thought I had arthritis even though no blood test had ever confirmed as much.
Eight years ago my knee dislocated while swinging away at a co-ed softball match. I dropped to home-plate like a sack of potatoes. My right knee was pushing my skin so far out that it looked like a tent had been erected. I couldn’t get up and the players didn’t understand what had happened. The catcher saw the dislocation, and trying to be helpful she smacked the kneecap trying to relocate it. My kneecap shattered. The umpire and catcher helped get me to the dugout. My team continued playing. All the while my knee swelled like a balloon. Eventually, they got the third out and my team returned to the dugout. They saw my leg and the pain I was fighting against and called for an ambulance.
The knee surgery pulled out tiny bone fragments while trying to reconstruct my patella. It took me an entire year of PT to get to the point where I could walk without a cane. My daughter was born days after my knee surgery. My poor wife now had two kids and a debilitated husband to care for. She was amazing.
Almost exactly one year later my left knee dislocated. I was doing an exercise at home when it popped out. Needless to say, I didn’t let anyone try to put it back in.
I had a terrible experience at the ER. They basically accused me of coming in for pain meds. The doctor asked me why I didn’t relocate it myself. I told him of my previous injury which he scoffed at and went to put my left knee back in. He couldn’t at first. I rolled while he pushed and it went back in. With all the surety of a cocky young doctor, he strode from the room in victory. As soon as he got to the door it popped right back out.
I have an amazing primary care doctor. He realized that something greater was going on with my joints. He referred me to a rheumatologist. He took one look at me and heard all the joints popping while I moved and asked me if I had ever heard of Ehlers-Danlos syndrome. I told him that I hadn’t and he put me through a series of flexibility tests. These Beighton tests verified [hypermobility and gave me a diagnosis of hypermobile EDS].”
More than hypermobile: EDS, anxiety disorders—and their impacts on the life of a male zebra
“My story revolves more around a quieter part of the disorder that is not talked about nearly as much as hypermobility: the link between EDS and anxiety disorders. The summer before my freshman year of college I was diagnosed with Obsessive Compulsive Disorder, or ‘OCD’ — a diagnosis that was incredibly frightening and even more confusing because I don’t fit the stereotype. My room is frighteningly messy, I don’t obsess over germs and my utensils can be out of order. All of those are valid OCD symptoms that I don’t aim to diminish, but they’re just not me. Instead, I get stuck in mental cycles that are irrational, upsetting, and exhausting.”
Pain, misdiagnosis, and more pain
“It all started in first grade, when my ankles hurt too much to play with the other kids at recess. The pain only got worse, and I was eventually forced to limp around all the time. I went to the doctor, who said that my ankle was sprained, and gave me a brace. After months of wearing the brace, nothing changed.”
Tackling EDS one challenge at a time
“Graysen’s EDS is mild-moderate, but the effects he has felt and will continue to deal with are life-altering. Being a rambunctious boy with ADHD and not being able to play contact sports is hard. Always being one small stumble away from an ER trip is also hard. But having to be cognizant of your significant limitations at such a young age is the hardest of all.”