Discover and read the best of Twitter Threads about #pots
Most recents (4)
Updating Twitter disability hashtag thread.
@AllisonR has educated me that I should use Sentence Case for #Accessibility.
@AllisonR has educated me that I should use Sentence Case for #Accessibility.
I have #brainfog so I know I missed someone. Please add your favorite resources as a reply.
Do you want to share your disability experience with others? Try these hashtags.
Amplifying stories
#InvisibleIllness
#MySpoons
#MyPainDay
#ShareOurPain
#ShareOurStories
#SpoonieStories
Amplifying stories
#InvisibleIllness
#MySpoons
#MyPainDay
#ShareOurPain
#ShareOurStories
#SpoonieStories
I’m starting a new hashtag, #Nightingales, specifically to connect people with #EDS #hEDS #MECFS #POTS #MCAS #FIBRO. However, all are welcome!
Why these diagnoses? The thesis is that they share either an underlying biological relationship (genetic, environmental, pathophysiological or otherwise) OR a nosological one: they are actually different but often confused for each other. #Nightingales
It’s my hope that by communicating across community, we can all become better informed advocates and allies; help each other find more accurate diagnosis and effective treatment; and discuss science + clinical approaches from an interdisciplinary perspective. #Nightingales
In case you are also chronically ill and planning for potential power outages or heat waves, here are some things I do or am considering doing for copes
Hopefully this will help someone else
Hopefully this will help someone else
It sounds weird but this dog pad is pressure activated cooling power. It requires no electricity and is reusable. (You can also make it RLY cold in the freezer.)
There are big dog sizes that work for my entire body
m.bedbathandbeyond.com/m/product/chil…
There are big dog sizes that work for my entire body
m.bedbathandbeyond.com/m/product/chil…
Consider filling a bathtub or bucket/tub with cool water. Dip your feet or entire body in to lower your body temperature.
One last thread on the #DysConf2018 by @rndNumGen. Hasan Abdallah of The Children's Heart Institute presented Sunday on "Stubborn POTS: Why won't my #POTS respond to treatment?" If treatment isn't effective after six months, it's important to dig deeper. (1/7)
@rndNumGen #POTS is a symptom complex rather than a disease entity in itself, with an underlying heterogenous pathophysiology. It has an unpredictable varying course, and the medical management paradigms is evolving. #DysConf2018 (2/7)
@rndNumGen To dig deeper, look at underlying pathophysiology. Look at medications that are being used--dosages, drug targets, interactions, etc. to see where you may be able to make changes. Look at comorbidities;they lead to more clinical severity and complex management. #DysConf2018 (3/7)
