Discover and read the best of Twitter Threads about #eds

Most recents (24)

I have helped dozens of people be officially diagnosed with #EhlersDanlosSyndrome simply because I notice them in the street with their hypermobility, and ask them questions. I then refer them to certain doctors and a geneticist.
All of them respond with “I got diagnosed!!! It wasn’t in my head!!!”
I simply stop people I see in real life, politely ask them if they’re willing to talk to me and they are shocked that someone knows them so well and have never even met.
Read 9 tweets
1/9 #MESpine story conclusion: Reformer induced CFS flare set me back to research. For the past 14yrs this has been how I fxn. I Google searched "neck chronic fatigue" and my world was blown wide open. Articles on cervical stenosis:MECFS, positional cervical cord compression...
2/9...Chiari, and the benefit of upright MRI's; then I read @jeff_says_that blog, then @jenbrea Medium article. I thought "Wait-I watched her doc! She's legit!" I read about her "normal" MRI that wasn't- the #emptysella. I found a link to her new FB group & it was the first group
3/9 for MECFS I'd ever joined. I got an upright MRI but the only new finding was 🥁 empty sella. AHA!!! I KNOW WHAT THAT IS! I poured over my imaging and noticed what I thought "might" be a CSF leak into my sinuses- "wait a min, could this relate to my surgery?" Answer: it could.
Read 9 tweets
Update: i did, indeed, go to the ER. Heart monitor listing v hig...Pulse ox reading HR 151Image
Me: what day did we go to the ER?
Ky: this week?
Me: touché

On the heels of THIS tweet, i should probably say that #COVID19 is not great but having a wheelchair changes *everything*

Read 105 tweets
Petra Klinge’s talk on tethered cord syndrome blew my mind. It‘s given me a deeper understanding of how tethered cord syndrome might play a fundamental role in the patholophysiology and symptoms of a subset of #MECFS and #EDS patients. THREAD [1]
Tethered cord syndrome is a cluster of symptoms that develop when the filum terminale, a string of connective tissue that links the end of your spinal cord to your sacrum, is either inappropriately attached to your spinal canal or is too tight. [2]…
This tethering exerts a downward force on your spinal cord. It’s why some neurosurgeons think tethered cord might predispose people to developing craniocervical instability/atlantoaxial instability (CCI/AAI) or symptomatic Chiari later in life. [3] Image
Read 49 tweets
I have been engaging with some people with functional neurological disorder (FND) diagnoses. FND is the new name for conversion disorder. They were upset about this thread and how it might stigmatize people with FND.
The last thing I would ever want to do is stigmatize other patients or disabled people. However, it's challenging to figure out how to talk about FND in a way that is not stigmatizing when misdiagnosis is *rampant* and *harmful.*
Furthermore, after digging into FND Hope’s website and list of symptoms ( I can only conclude that if these symptoms are being framed as FND symptoms and differential diagnoses of #MECFS, #EDS, #MCAS, #POTS...
Read 58 tweets
My husband and I both got sick with what we think was #COVID19 in late March. It took us each 2.5 months for our symptoms to completely resolve. It may take me, someone with a history of #MECFS and #MCAS, even longer to fully heal. Here are some things I’ve observed.
Our onsets were, at the time...odd. We never spiked fevers and had only “mild” lung symptoms. Our symptoms never fully announced themselves in the form of an acute illness but also took forever to go away. The flu is a thunderclap. This was more 2.5 months of daily gray, drizzle.
My husband’s illness began on March 22 with an upset stomach. Then, he started falling asleep for hours at a time in the middle of the day. At first, we thought it was a stomach bug. One day, he walked up a hill he‘s walked many times before. It winded him. His chest was tight.
Read 63 tweets
People can be disabled AND mean to other disabled people. They can be ableist, they can be abusive, they can be wrong.

A friend who is paralyzed ended things with me when I became an ambulatory wheelchair user. She said I had no business being in a wheelchair if I could walk.
I used to date a deaf person.

I know some basics, but when I asked them if they’d like me to learn sign language, at a school in a course, they said no, because as a hearing person I’d be invading their culture.

🤔🤷🏻‍♀️ (1/2)
They then excluded me from everything by only meeting with other signing deaf ppl & I’d just sit there and not understand a thing.

They were angry when they found out I had been watching YouTube videos to learn more so I could understand, even tho I couldn’t sign.

We broke up.
Read 15 tweets
I don’t know how to get the word out about this. I am concerned about #MECFS patients who are a) having craniocervical fusions b) in Europe and c) are not actively engaged in patient groups on Facebook. [1]
My primary concern is that a significant proportion of patients who have fusions experience an initial improvement, but then have worsening symptoms roughly 5-7 months after surgery.[2]
In many cases, this is due to the “unmasking” of tethered cord syndrome, a condition many patients with craniocervical instability have. [3]…
Read 76 tweets
I am going to write something that will be difficult to understand unless you have been unable to work, severely incapacitated, homebound, or bedridden due to a viral infection for 1-40 years. #MECFS
We (#pwme) are VERY scared for #COVID19 patients who develop chronic symptoms, and have been talking about it since January. We want nothing more than to help spare them our fate.
Yet––it is HEARTBREAKING to see some of the intense outpouring of compassion from doctors for these patients, the proactive (and appropriate) scientific curiosity.
Read 15 tweets
Très fière d’avoir présenté ce matin notre nouveau groupe Écologie Démocratie Solidarité durant notre conférence de lancement.

👥17 député.e.s
♀dont 65% de femmes
🎯15 priorités politiques

Thread ⤵️

Plus d’infos ici :
1/15 #EDS #thread ⤵️
2/15 #EDS #thread ⤵️
Read 16 tweets
I’m going to take a moment to describe an everyday moment in the life of someone living with chronic illness or pain, aka #spoonies.

I don’t want to write this because I still have internalized ableism and the accompanying shame.

Which is why I’m making myself write it.

I’ve done everything I’ve done so far today in terms of reading, researching, and writing, lying in bed on my right side.

It’s my only pain-free position, and lying down doesn’t trigger my POTS and the autonomic nervous system deregulatory cascade that comes with it.

POTS is a form of autonomic nervous system dysregulation. It stands for Postural Orthostatic Tachycardia Syndrome.
My heart rate goes from 60 to 140 if I stand up. My blood pressure, however, does not increase. So my heart races but my brain does not get adequate blood flow.

Read 12 tweets
What everyone with & who supports people with #EDS should be doing, not only in support of .@jameelajamil & her partner against a vile attention seeking bullying attack, but also in support of the estimated 1in4 who potentially are already living with a form or subtype of #EDS &
Will spend their entire life fighting this sort of medical misogyny & abuse not only from uninformed ignorant ex Mirror-editing fake tanned grown arsed men that should blatantly know better but need the attention/controversy to continue their 80s/90s heyday buzz, but the cruel..
And real world implications this has on people living with this disability, how it effects them, others opinions regarding what rights & support these people should then have, medical opinions including funding & research forcing scientific evidence proving the existence of..
Read 7 tweets
Here's my latest* update to my vetted collection of Twitter Disability and Chronic Illness hashtags. Please share it!

Thank you :-) Graffiti background. Foreground in black letters on a  white background to the left reads “Twitter Disability and Chronic Illness Hashtags”<br />
This collection is current as of 01.30.20, previous Twitter update 09.11.19.

There's a PDF version coming up this weekend, to be posted to my Kofi profile. I'll add the link toward the end when it goes up, after the questions, where you can also sign up for email updates.
This version has added

- community suggestions,
- mental health hashtags,
- Medical crowdfunding hashtags,
- and a section for cancer-related hashtags.
Read 84 tweets
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
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
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

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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