The long-awaited 2017 criteria for EDS and the associated papers have been released! Phew!
The new nosology includes 13 types of EDS.
Many of these are new to the classification table, they are not newly described though as it has been 20 years since the last classification in 1997. (You can find the old 1997 Villefranche classification in my ‘Types of EDS’ post from a while back.)
This is very exciting for those people with diagnoses of these rarer types. They have finally been properly recognised as members of the EDS family! I’m looking forward to reading the rest of the papers now they are all released by the American Journal of Medical Genetics. It will be interesting to learn all about the ‘new’ types and how to support people with those diagnoses.
hEDS & Hypermobility Spectrum Disorder (HSD)
Changes have been made to the diagnostic criteria for hEDS (which have become more stringent) and the new diagnosis label HSD introduced. Previously, the hypermobile type was often something of a subjective diagnosis depending on which doctor you saw. These new criteria should help funnel patients into more specific phenotypic groupings and prevent variance from clinician to clinician; all of which will hopefully aid research toward finding the genetic cause.
These changes are however causing many people who fall into these patient groups a lot of stress. It’s all very new and different and it will take a bit of getting used to switching labels from JHS (Joint Hypermobility Syndrome, which has been discontinued from use) to HSD.
HMSA patron Hannah Ensor has written a brilliant blog on her feelings about her ‘label’ changing to HSD and it’s well worth reading, you can find it here: “Hypermobility Spectrum Disorder; What it means to me”
It’s important to remember; just because someone is given the HSD diagnosis does not mean that someone else with a hEDS diagnosis is automatically more ill or ‘worse’.
Someone might miss fulfilling the hEDS criteria by not being marfanoid, or not having soft stretchy skin but that doesn’t make their active symptoms any less. Pain is pain.
I will consider writing a separate post explaining more about the new diagnostic criteria for hEDS and HSD and how they work as a lot of people on social media seem confused by it. I think this is just down to it being so new and a lot of information at once though!
2017 Types Chart
I will be updating my ‘What Is EDS?’ page with the new information as follows:
Whatever your diagnosis is or even ends up being in the future, the HMSA charity will be there for you so do check them out!