Discover and read the best of Twitter Threads about #edsawarenessmonth
Most recents (3)
Flaunting my zebra striped nails and one of my numerous braces for #EDSAwarenessMonth! Extreme hyper mobility is a weird thing, because on one hand, I can do some really interesting contortion tricks...but on the other hand, if I yawn too hard, I might dislocate my jaw. 
This is problematic when my condition causes chronic fatigue & therefore a lot of yawning. I have a brace for just about every joint in my body, & several canes with handles of various shapes & sizes, because my accessibility/mobility needs vary day by day.
Before the age of three, I already knew how to pop my own elbows back into place & I don't remember a single time in my life when I wasn't in at least a moderate amount of pain.
It's #EDSAwarenessMonth and I am one of those people who bizarrely feels like I don't 'deserve' a diagnosis because I don't have a full house of Beighton symptoms and I am not as badly off as my friends, even though I subluxate my shoulders every night, live in constant pain...
...and have been worried for the last five years that I may dislocate my jaw.
Right now I am fundraising for a woman in my city whom I have never met who is dying from the cascade of health issues that comes from being medically gaslighted for so long (even though she worked in a hospital before)...
Given that it's #Fibromyalgia Awareness Day in the middle of #EhlersDanlos Awareness Month, let's talk about misdiagnosis.
People with hypermobile EDS or Hypermobility Spectrum Disorder often spend years misdiagnosed with fibromyalgia…
#fibroawarenessday #EDSAwarenessMonth
People with hypermobile EDS or Hypermobility Spectrum Disorder often spend years misdiagnosed with fibromyalgia…
#fibroawarenessday #EDSAwarenessMonth
…I meet people with really clear signs of hypermobility who've been diagnosed with #Fibromyalgia by rheumatology, treated at pain management clinics, or even seen physiotherapy.
None of those professionals seem to know to screen for hypermobility syndromes…
#fibroawarenessday
None of those professionals seem to know to screen for hypermobility syndromes…
#fibroawarenessday
…This is important because hypermobility syndromes have a physical basis for joint pain that can be improved by multidisciplinary management.
Occupational therapy can provide equipment and teach behavioural changes that reduce stress on joints, Orthotics can support ankles…
Occupational therapy can provide equipment and teach behavioural changes that reduce stress on joints, Orthotics can support ankles…
