Discover and read the best of Twitter Threads about #EDS
Most recents (5)
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
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
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
#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
#BanBalloonsInstead #fragrance #MCS #MCAS #allergy #asthma
[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
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…
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)
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)
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.
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.
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.
