Discover and read the best of Twitter Threads about #EDS

Most recents (8)

Here's my latest update to my collection of active Twitter #Disability & #ChronicIllness Hashtags - previous update 12.13.18.

Please share it. Thank you! :-) Light blue sand background has the # drawn in the sand to the right. The left side is blank. <br />
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At the bottom of the picture, text reads
Portable PDF version will appear on my Kofi in the next day or so.

Link: ko-fi.com/TinuWrites
HASHTAGS FOR PERSONAL NARRATIVES

These hashtags are for sharing your stories & experiences. Also helpful for crowdsourcing solutions.

#InvisibleIllness
#MySpoons
#MyPainDay
#ShareOurPain
#ShareOurStories
#SpoonieStories
Read 45 tweets
(Thread)

EDS experts shouldn't mention co-occuring anxiety in their research articles unless they commit to making it explicit that #EDS #POTS #MCAS can all mimic anxiety symptoms+that it's common for psychiatric misdiagnosis 2b weaponized against vulnerable patients leading to-
-- #mPTSD and iatrogenic trauma.

Anything less and they're giving non-expert rheums and PCPs carte blanche to slap "it's all in your head" onto every "difficult" patient without reading further for nuance. It's irresponsible, unethical exacerbation of patient trauma.
Thanks for coming to my TEDtalk.
Read 11 tweets
Given food that had cheese in it on Thurs afternoon. Thought I noted the taste but told myself no, b/c restaurant made it clear no dairy. Late Friday night started having problems breathing. Now (Sat) intermittently gasping like a fish on dry land.
This is a delayed Type IV hypersensitivity reaction, say the interwebs. When you get a reaction about 48 hrs after the 'initial insult'. It's slow b/c it requires replication of T cells that have an antigen to one of that food's proteins on their surface.
This is similar to what happens in #celiac. It's also possible for the response to come from basophils or eosinophils. Sometimes it's IgE-based, sometimes it's not. It appears we know little, or I feel there'd be sub-classifications for the reaction types.
Read 12 tweets
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
Read 12 tweets
1/I've said many times that I am poor because I am unemployed (except for my writing) and I am unemployed because I am disabled.

I am now officially rejecting that shit.

I am still disabled. I still am not employed.

#Disability #ChronicIllness #poverty
2/But the reason I am unemployed is because society has deemed me disposable. This isn't on me.

#disabled #DisabledPeopleMatter #PplWDisabilitiesMATTER
3/It's because society has decided the WANTS of the abled (specifically in my case, to use fragrance and decorate with balloons) are more important than my survival. This isn't on me.

#BanBalloonsInstead #fragrance #MCS #MCAS #allergy #asthma
Read 18 tweets
[food]

A really weird thing about #MCAS is that I can eat a food and be fine, but if I eat leftovers of the exact same food a day or two later I'm ... not fine

Before I knew abt MCAS, I thought I was just immunosuppressed and reacting to bacteria other people could tolerate
This is sort of true, actually

I was probably reacting to the products of microbes breaking down food

More on the science of that here

#MCAS

mastattack.org/2017/10/mastat…
[food]

When I have a bad MCAS reaction, it looks a LOT like food poisoning

I won't go into the gory details, but at my worst I need IV fluids and prescription strength anti-nausea meds (which happen to also treat anaphylaxis like symptom)
Read 22 tweets
Let's talk about the F word.

The NDIS had a proposed Medicare levy increase, which the original proponents of the levy welcomed.

I understand that some dis org may not understand this issue. However, it is not the job of activists to spend time ploughing through reports.
2/ You need to read the Productivity Commission's Oct 17 report (screenshot above, blind folks, too long 2 describe pc.gov.au/inquiries/comp… ) And you also need to pay more attention. The way they are limiting & capping the scheme is well known and it is at the directive of govt
3/ This has been released, read, understood. And it DIRECTLY affects your membership, so you need to listen to those members (I know you do already, but we hear it every day on the ground.)I will reinforce some of the issues here which outline WHY you need to harmonise messages.
Read 26 tweets
According to one neurosurgeon, my 2012 MRI (the self-same that my neurologist used to diagnose me with conversion disorder/hysteria) shows very clear signs of intracranial hypertension, most notably a pituitary gland that has been flattened into a pancake.
So when in #unrestfilm I say, "I can feel my brain pushing out my eyeballs" that is apparently true.
Of course I have been saying this for years, most notably when at the @GlendaleHosp ER last month, where I was diagnosed with "anxiety" and torticollis (tilting of the neck), even though the issue was that my neck COULD NOT TILT.
Read 18 tweets

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