Discover and read the best of Twitter Threads about #mcas
Most recents (7)
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
This is the Berlin Conference all over again. Cut & Slice Africa, disregard what the indigenous owners of the land say. But you make your choice. Here is the thread.
TiTLE Northern Rangelands Trust (NRT), and IEBC Kenya on scrapping of #Constituencies in Northern Kenya.
TiTLE Northern Rangelands Trust (NRT), and IEBC Kenya on scrapping of #Constituencies in Northern Kenya.
#NRT, @USAID several @EU_Commission countries are lobbying the @IEBCKenya and the Environment, Mining, Minerals, Wildlife and Pollution Committee in #KENYAN Parliament to scrap constituencies to make one single 'manageable' constituency in Northern Kenya.
[Note that #NRT is owned by the @RoyalFamily. It is NOT owned by 'the communities' - who have no land title deeds - all this land has been "grabbed" though eviction, burning homes, killing cattle, poisoning boreholes and "NRT" does not benefit the community in any manner]
[Food, dietary restrictions]
Working on a mind map of my #MCAS triggers
This is part of the fermented/Aged Food branch. One intolerance has a cascade effect on other foods.
Working on a mind map of my #MCAS triggers
This is part of the fermented/Aged Food branch. One intolerance has a cascade effect on other foods.
[food, dietary restrictions]
This mind map thing is really helping me process some feels and I think also it's less "here's my huge list of food intolerances" more "a few categories that have many sub categories"
Which is helping ease my internalized ableism tbh
This mind map thing is really helping me process some feels and I think also it's less "here's my huge list of food intolerances" more "a few categories that have many sub categories"
Which is helping ease my internalized ableism tbh
[Food, dietary restrictions]
I know there's a lot of overlap with mast cell triggers, so in case this helps anyone here's my current mind map of #MCAS triggers
Help with captioning is appreciated.
I know there's a lot of overlap with mast cell triggers, so in case this helps anyone here's my current mind map of #MCAS triggers
Help with captioning is appreciated.
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)
[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)
Called 111 because the vertigo and headache is really not lessening since that MRI, and got an appointment for an out of hours GP at 8pm. Also just discovered that patients with MCAS have been found to react badly to gadolinium (the contrast used in MRIs). I have MCAS.
Surely someone should maybe have warned me about this before? Like "Hey, this pre-existing condition means you struggle to excrete this very damaging toxic metal in the same way most other patients can".
I'd have pushed for an MRI without the contrast if someone had warned me. I'm now kind of furious.
