@herhandsmyhands
"Betrayed by the Beighton Score" YES!!

Gaslight by doctors. YES!!

It only took 48 years from onset of symptoms to finally getting a correct diagnonsis.

#hEDS #EhlersDanlos #BeightonScore

Betrayed by the Beighton Score, and the gaslighting, yes, so fucking familiar.

#hEDS #BeightonScore

https://www.statnews.com/2022/12/12/ehlers-danlos-syndrome-patients-turned-researchers/

#hEDS up #NEISvoid

You can listen or read the #transcript of this episode below, which includes a take-down of the #BeightonScore used for diagnosing (and denying diagnosis of) #EhlersDanlosSyndrome, a discussion of both the 2017 criteria and the new revisions under discussion, as well as #CurrentResearch into #fibroblasts.

The guest is Sabeeha Malek, a PhD student doing biomedical #research into #EDS who also has EDS.

#PatientLed
***

What happens when diagnostic criteria aren’t fit for purpose | The Rest Room #podcast

🔗 http://natashalipman.com/what-happens-when-diagnostic-criteria-arent-fit-for-purpose/

"EDS isn’t necesarily a Hypermobility disorder, it’s a connective tissue disorder. And Hypermobility is just one manifestation of the connective tissue disorder."

@chronicillness