Accordingly, please take the following with a grain of salt, and know that it is intended primarily to target those with the less rare form of EDS, hypermobile EDS or “hEDS” only now, as well as the new forms of the Hypermobility Spectrum Disordersprimarily.
Prior to March 15, 2017 we spoke of six main forms of EDS only, and some additional hypermobility syndromes (HMS, JHS, BJHS) which seemed to share a lot of overlap and confusing everyone.
These have all been folded into either the newly sharpened EDS criteria, or the new categories of Hypermobility Spectrum Disorders for those who don’t meet the tightened diagnostic criteria for hEDS as of March 15, 2017 for any reason but exhibit a lot of the following issues just the same, indicating some kind of systemic connective tissue disorder, after all clear ones have been excluded. (E.g. OI, Marfan, Stickler, etc.)
The more rare forms of the Ehlers-Danlos syndromes are enough easier to suspect and diagnose (generally) due to their severity and/or distinct signs that they generally have less trouble doing so. Please consult The Ehlers-Danlos Society for more information on all forms (March 2017).
Allergies and sensitivities or MCAS (a form of MCAD)
But I keep finding so many additional common signs and symptoms that people exhibit, that I felt them worthy of another post so am hatching this one. Though let me be clear, many of these are actually common comorbidities still, and none of them is truly diagnostic alone. Just part of the trail of breadcrumbs I hope you find leading you to suspect and look further into the EDS (and now HSD, March 2017).
However, rather than expounding on the signs I’ll just list them with a few links where able to outside sources about them. Again, because this is a systemic condition the myriad ways it manifests are rather mind-boggling in number and ultimately limitless: they affect the whole body in some way or another. Again this seems to be what makes it so hard for doctors to identify the condition prompting some wise person to quip:
If you can’t connect the issues, think connective tissues – author unknown*
*If you know the author, please tell me so I can give proper credit! And no it’s not Dr. Heidi Collins – she said she doesn’t know either. She just quoted them too! (She says so in her 2014 talk of the same title at the EDNF Conference.)
The thing is, doctors have only been told about or possibly only remember the grossest signs of the rarest types (of EDS and all HDCTs) for the most part, so many of us with less hypermobile or gross types keep getting missed still. Why I’m writing!
Anyway, on with the unofficial and incomplete list. And if you find yourself checking off more than not, I would highly suspect you!
Postive Gorlin’s sign (ability to touch tip of tongue to nose, yes I think this case has EDS, natch)
Trouble swallowing (can have both neurologic and allergy-type drivers)
I’m stopping here for now, but will periodically add to this list. Many of these were already listed on the common comorbidities page, but I’m trying to add signs that in themselves are not full comorbidities, but just signs we find common in EDS and HSD patients. Alas, I’ve caved and ended up adding/sharing a couple that are driven by one of our most common comorbidities I find: MCAD.
And I will re-iterate that though many patients are quite flexible or “bendy”, and some even extremely so, NOT ALL are very or even at all “bendy” or flexible! So do not consider yourself exempt just because you are not, sorry. Many of us stiffen with age and early onset arthritis, and some, like Dr. Jaime Bravo a leading rheumatologist in Chile with EDS himself told me never are in 2012.