Discover and read the best of Twitter Threads about #EDs

Most recents (17)

Good Morning #EDS #EhlersDanlos Twitter
This is long thread on issues the past week with The EDS Society, my ideas to move forward & after this I'll be quiet on Twitter for awhile. It's time to do behind the scenes work now, I'm fortunate to have the resources to do so. 1/
On Nov 05 the fantastic (& brilliant) @DrEReinhold dropped this long anticipated paper on prevalence of hEDS Conclusion : not rare. The community was ecstatic. No more refusals from dctrs to test for EDS because it's *too rare*
The same day, The EDS Society posted an unsigned letter (later signed) challenging this paper. Issues? Use of 'JHS' patients (the Demmler paper dates back 27yrs, dx was called EDS 3-JHS) & that many would now be considered 'HSD' based on new criteria
Read 20 tweets
Day 2 of #MSSessions19 is about to start: Move on up with @ConorKerley - I will thread this day again! Action for Happiness: be kind to yourself today. Remember, progress takes time.My MS journal with the Ms Sessions 17and 19 stickers.
Movement is life! #MS or not...research has changed their approach to exercise for people with #MS and regular physical activity is advised...there’s a whole range of exercises for any level of mobility #MSSessions19 #MSActiveTogether
@mssocietyscot Active Together campaign has a range of exercises: more info here:…
Read 49 tweets

There seems to be a GLOBAL EPIDEMIC of #ChronicIgnoranceSyndrome that is effecting the medical establishment & resulting in constant misinformation & treatments for #ChronicPain #CFS #pwME #Fibromyalgia #hEDS #EDS #Lyme #FND, the list is...1/2
shocking & endless. So during #InvisibleDisabilitiesWeek we ALL have an opportunity to highlight this spread of #ChronicIgnoranceSyndrome, the effect this has had on our #MentalHealth & what we are collectively doing daily to fight this medical ignorance & abuse! 🦓✊ #MAIMES
Read 3 tweets
Here’s my latest update to the list of Twitter #Disability & #ChronicIllness Hashtags.

- previous update 02.24.19 -

Please share it! Thank you. :-)

@ImageAltText Graffiti background. Foreground in white letters on a  red background to the left reads “Twitter Disability and Chronic Illness Hashtags”
There will be a PDF version up for download on my Ko-fi, likely tomorrow morning. The link is at the end.
Hashtags For Personal Narratives.

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

Read 58 tweets
#MastCell Dr Anne Maitland at the #EDS Global Learning Conference @asktheallergist
- our environment has changed dramatically
- chronic illness has increased dramatically in the past 60 years
- can create an allergy in mice by exposing to a toxin then the allergen
MCAS Thread
- Now seeing the same chronic illnesses we see in humans in dogs
MCAS Thread
- Dysregulation in mast cells and nerves: common in CTDs
- Greater risk of having classic allergies
- Can't really diagnose all this with a blood test today, too many tissues and systems in play
Read 15 tweets
1/ I am one of the admins of a caregivers facebook page. I'd like to help others find the info they need to be good caregivers. I am not slanting this toward anything specific, though I am clustering around: #EDS, #EhlersDanlos #ME #CFS #Fibromyalgia #Fibro
2/ I know some of you are: patient, caregiver or both. I'd love to hear the thoughts/advice you'd give a caregiver (please be clear about your role if you are comfortable doing so). Also, if you have websites you think are great too please share - some are listed below.
3/ @JanetDafoe I know has given a lecture and it is captured in this video. Maybe there are other resources you'd like to share?
Read 7 tweets
Adding thread about vascular and nerve entrapment
Thread: Thank you @violetbakes for the pictures backing up the next installment of what I think would be useful to #EDS patients. Something that could be used if going to the hospital
Thread: thank you @ABMollyblum for the next installment of my pinned thread of things I’ve found useful in managing #EDS #EhlersDanlos in my wife and daughter. Info for Gastroenterologists for your GI appt.…
Read 11 tweets
When a doctor says “why do you need an #EhlersDanlos diagnosis, there’s no cure.” It demonstrates a lack of understanding of medicine, science and patient self-advocacy. I am NOT claiming these tweets are the best or most current sources, nor is the list of reasons complete 1/11
For most with #EDS the extreme relief of being told “it’s not all in your head, it’s real and there are others like you” is reason enough. So many with EDS feel alone. Diagnosing someone with conversion disorder instead , is it’s own problem! 2/11…
While #POTS, #MCAS, #Osteoporosis in young women, and many other conditions may be less common in general they are very common in the #EDS population. If you have a horse, think horse conditions, but if you are looking at a zebra, think zebra diseases 3/11…
Read 12 tweets
My wife and I wow a huge debt of gratitude to @roomcmoo and @H2OhTwist and they don’t even know what they did! You see my wife (#EDS #POTS #MCAS) and my daughter (#EhlersDanlos) are at the beach for an 8 day vacation and walk up to a mile each day. So what??
I met my am a wife almost 6 years ago. At that time she had chronic bronchitis and both she and my daughter had bad asthma. I also learned her joints dislocated regularly, she had G.I. issues, she would get adrenaline and a million other debilitating symptoms.
She had been to more doctors than she could count and had more test then she could count. Her medical file was at least 8 inches thick. She had never gotten a clue to what she instinctively believed were connected conditions. She was told “it’s all in your head” or “anxiety!”
Read 10 tweets
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 />
<br />
At the bottom of the picture, text reads
Portable PDF version will appear on my Kofi in the next day or so.


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

Read 45 tweets

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

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


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… ) 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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