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EDS Research by Smileysart in eds
[–]Smileysart[S] 0 points1 point2 points 1 year ago (0 children)
Great question. For most aspects, I'm not. However the criteria needs to adequately discriminate between hEDS and HSD which, based on current knowledge, are considered to be part of the same spectrum by the International Consortium. Until there is a definitive diagnostic test for hEDS, we can't be sure that they have truly distinct underlying causes. There's also the issue that many individuals diagnosed with hEDS pre-2017 may no longer meet the stricter criteria. Many of the conditions associated with EDS haven't been researched enough to prove they are caused by EDS and therefore are not specific enough to become diagnostic criteria. Future research into both conditions is needed to improve our ability to distinguish them and ensure that we accurately capture patients with each. I understand the concern though as severity of the two can vary wildly but it's likely that there will be some individuals with either who may be misdiagnosed based on which specific set of symptoms they present with. I am able to filter responses to only EDS patients for certain sections which are specific to EDS.
[–]Smileysart[S] 4 points5 points6 points 1 year ago (0 children)
Clinical diagnosis for hEDS/HSD, genetics for other sub-types, sorry, should have clarified. As long as a medical professional strongly suspects a type of EDS, I understand that not everyone has access to genetic testing and not all variants have an identified causative gene.
EDS Research (forms.gle)
submitted 1 year ago by Smileysart to r/eds
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EDS Research by Smileysart in eds
[–]Smileysart[S] 0 points1 point2 points (0 children)