azteclady has movedJan 15, 2023

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/

Revenge of the gaslit patients: Now, as scientists, they’re tackling Ehlers-Danlos syndromes

A group of young patient-researchers is showing that patient-led research can be indispensable in the effort to crack complex, long-misunderstood illnesses, like hypermobile Ehlers-Danlos syndrome.

STAT
Show threadBart Graham

@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

Jan 17, 2023 at 6:03pmWeb
Show threadazteclady has movedJan 17, 2023

@mawrter The fact that our symptoms don't match ONE metric, when the condition itself presents in so many different ways in different people, and so we are dismissed as *wanting* to be 'special'.

Meanwhile, here we are with femurs subluxating at the least excuse--or no excuse at all.

Show threadBart GrahamJan 18, 2023

@herhandsmyhands One of the big revolutions on the way to a correct diagnosis was to demand that my docs stop talking in terms of body parts only. I even had to draw a map of my body showing dates when problems started appearing joint by joint. I had to force conversations to focus them on my entire body.

I showed the map to every clinician I came across and it still took 2 more years for an osteopath + physical therapy team to finally figure it out. Whew.

#hEDS