It’s Ehlers Danlos Awareness/Hypermobility Spectrum Disorder (EDS/HSD) Awareness Month in May.
As a reasonably private person, I debated whether or not to share my hypermobility journey. I decided to, because I’ve been experiencing symptoms since I was 2 years old(!), had pain for 28 years (!) and actively looking for a diagnosis for 20 years (!) including seeing people who promoted themselves as EDS experts and who gave me often conflicting and incorrect info.
So…even in the best of circumstances, it is NOT easy to get diagnosed. Even for someone who is well-educated and extremely stubborn.
A very brief history–I had a bunch of dislocations as a child, then had muscle tears, knee problems, hamstring issues, shoulder problems, jaw problems, etc. And then the POTS stuff…but it only became really bad when I developed ankle instability 18 years ago which got bad enough that for a time I literally couldn’t stand or walk. That was when a doctor first mentioned hypermobility to me 18 years ago. I understood EDS and hypermobility as the same thing then (nope). Later, I was told that I could get gene tested if I wanted (again, no—the genes for hEDS aren’t identified). But I was told that it wasn’t a major part of my clinical picture, so it wasn’t worth pursuing (*sigh*)
Yet the mixed messages continued. I’d have some doctors or PTs who would say wow, you are the most hypermobile person I’ve treated. And then next dr, would say, well, you are hypermobile, but your score on the Beighton scale isn’t high enough. And I’d be scratching my head. Yes? no? Why different answers? What is going on here?
And when I had my most recent bout of intense bizarre symptoms, where the ligaments in my feet literally collapsed, leading to the loss of most of the cartilage in my feet and bone swelling, I wanted a diagnosis. Side note–most of my doctors did not believe me. I needed to get an MRI showing loose ligaments before anyone would believe there was a real problem, and my symptoms went on for ~18 years before my symptoms progressed that far. 18 years of going to doctors, begging for help. That is straight up appalling.
So–if I didn’t have EDS, what was happening? How could this be a mild form of anything?
I went to one of the top experts in the country, who explained that it didn’t matter if I had EDS or HSD, I needed treatment. He was clear that the label had nothing to do with the amount of impairment patients experienced. I’m extremely hypermobile, but just not as profoundly in the joints examined for the EDS testing.
And that made so much more sense to me….because what I’ve been experiencing is not mild. It’s just distributed in different joints than what is captured by the Beighton scale. And research has shown that isn’t the best way to measure hypermobility anyway.
So. There are not enough trained health care practitioners of any sort aware of EDS and HSD, and so much need. I am so grateful for all the EDS Society does to train and advocate. I am extremely fortunate that I *could* just go to an expert—there are far too few! I’ll be sharing a little more of my story, and a little more education on my website in the next month.