Link & Research Roundup – Dec 1, 2019
Weekly roundup of stuff I’ve come across in the last week worth sharing. Articles: Reply to “Concerns regarding the inference that EDS is not rare” (Nov 2019) POTS FAQ (PDF) from STARS (Syncope Trust and...
The Ehlers Danlos Society Rareness Drama
Lots of interesting commentary on the EDS Society (TEDS) recently on Twitter. My #1 issue with them (out of a few) is still that, despite looking for & requesting links to...
ARTICLE: Diagnosed prevalence of Ehlers-Danlos syndrome and hypermobility spectrum disorder in Wales, UK: a national electronic cohort study and case–control comparison (2019)
A new article from Dr. Emma Reinhold & Joanne Demmler has just been published, which shows that EDS/JHS is #NotRare! And though we know it is significantly UNDERdiagnosed (only approximately 1 in 20 hEDS/HSD patients is thought...