Discover and read the best of Twitter Threads about #socdx

Most recents (3)

#DysConf2020 Neurogastroenterologist @LauraAPace talking about the multidisciplinary #EDS clinic she helped to set up -- time to dx for the geog area was v long, time to being seen by a clinical geneticist for referred pts was THREE to FIVE YEARS.
Wanted to track comorbid disease burden/syndrome burden. Clinical phenotype was often more severe than the diagnostic label suggested (for hEDS, etc). Need a more comprehensive dx for these patients.
The clinic ultimately didn't work bc, when the clinicians from the specialist EDS clinic recommended patients be followed up with formal screening for potential autonomic dysfunction,& passed on the testing/mgt outline to their primary care physicians...
Read 12 tweets
Listening to Christine Gordon of @ReadingsBooks launch @Jacinta_Parsons’s book “Unseen” - a book not just about the events of enduring & #chronicillness but also about its #complexity. JP hopes that she has captured something of the nuance & diversity of the #LivedExperience...
@Jacinta_Parsons says the path to dx is an underappreciated & often lengthy aspect of the experience of chronic illness - it’s not necessarily an easy path to getting a diagnosis & treatment.
When the change in your health is incremental it can take years from the onset of symptoms to eventual diagnosis. I am fascinated w the transformative power of the diagnostic moment #crohns #socdx
Read 35 tweets
@FandomjunkieZee @bennessb Clinical depression, seronegative arthritis/#spondylarthropathy, food intolerances (although I needed help working out the specifics), #EDS, #POTS, #endometriosis, #ActuallyAutistic, #PyoG. Thankfully in the latter case I only had a STRONG HUNCH for days before dx was confirmed.
@FandomjunkieZee @bennessb @threadreaderapp unroll, danke schön! 😄
Read 3 tweets

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