Discover and read the best of Twitter Threads about #DysConf2020

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#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
@satish_r_raj: pharmacological treatment for #POTS. Notes that non-pharm mgt (compression, fluid balance) are generally the foundation of management, even for the many pts who do also require medication as part of their mgt strat. #DysConf2020
Not just about high HR - tilt table cf normal controls, obv the #POTS pts get HRVelevation — BP may not change heaps — but also they feel MISSRABLE, v unwell, presyncope. .@satish_r_raj #DysConf2020
Up to 70% of #POTS pts have low blood volume!! Not heaps of data supporting this historically, but theorised that hypovolemia may increase sympathetic tonicity & trigger hyperadrenergic state. Now have data supporting this in forthcoming study! #DysConf2020
Read 36 tweets
Dr Tae Chung on the limitations of non-pharmacological management strategies for #POTS: increasing sodium+water intake > risk of elevating BP too far esp in older pts.#DysConf2020
Prob less important for younger pts (20s,30s) but worth keeping an eye on & encourages pts to self-monitor HR & BP regularly.

Also if it makes you per a lot, esp at night, can really mess w sleep, cause/contribute to insomnia #DysConf2020
Dr Tae Chung notes that increased functional capacity through salt+fluids is a VERY IMPORTANT medical need & that increased capacity needs to be balanced against the potential risks (which are not well understood esp in this often-younger population w #POTS). #DysConf2020
Read 8 tweets

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