Hi there (: I'm so so so sorry to bother you but I'm sooooo confused -- I've seen a lot of people say EDS Type III and JHS but there's no definitive answer on whether they're the same? And I think I fit with the symptoms but it's still confusing and difficult n stuff :/ Sorry to bother you, I just wanted to thank you so much for making the resource master post and hopefully this isn't a problem or rude or anything :7 So thank you and I hope this is alright! :1
of course it’s not being rude :) I’m happy to try and help.
Short answer: ok, so in my (nonprofessional opinion) it really doesn’t matter
the diagnostic criteria cannot distinguish between the two syndromes, and are often used interchangeably anyway (the Brighton criteria, developed for JHS are being used more and more for EDS)
the treatment is exactly the same
the list of accepted symptoms and secondary disorders is virtually the same
a study showed the collagen had the same weird errors in both types (they can’t be distinguished under a microscope)
the same study also showed that family members of people with EDS III who don’t meet the current criteria for EDS often do meet criteria for JHS. This supports the idea that it’s the same gene, just expressing differently in different family members
there are already a bunch of genes associated with hypermobility type (although accounting for just a small percentage of cases) so it’s not like just one gene covers the entire hypermobility type anyway
the two are used together or interchangeably in all kinds of studies and resource material, so it’s hard to even get specific information about the two
I think the vast majority of doctors writing about this stuff agree they are the same thing, and agree that a new set of diagnostic criteria should be created. This will probably happen during the 2016 international symposium. Or maybe they will shock everyone and create two separate types, with more distinguishable diagnostic criteria. But until either of those things happen it honestly just doesn’t matter. I tend to use EDS instead of JHS because it’s taken much more seriously, and because I may have a mild classical type instead. But it really doesn’t change much at this point