Discover and read the best of Twitter Threads about #EhlersDanlosSyndrome

Most recents (20)

If you have #EhlersDanlosSyndrome has your shoe size changed?
I was a size 6 shoe til I got pregnant with my son. Then a 6 wide/6.5. Then I got the big sick, now I’m a 6/6 wide/7 lol 😆
Oops also meant to include 6.5 for the now shoe size
Read 5 tweets
Millions are missing
And the cooper’s wife is too
So we hold our silent vigil
For a girl in a gown too blue
Lost in halls and hospitals
A silver talisman bears true
The diagnosis they doubted
With “Maybe it’s just you?”
“Maybe it’s your fault
Did you ever think it might?
It sure looks like anxiety
Caught in fight or flight
This isn’t an emergency
I’ve no time to spare tonight
For another hypochondriac
Who thinks her Google search is right”
The words echo again
We’ve heard them all before
Generations of us girls
Lost to fable and to lore
Seal wives and fae women
Changelings left by the door
You wouldn’t hear our screaming
So now you’ll hear our roar
Read 15 tweets
When I got #LongCovid, it felt like I began to fall apart. But that was not only figuratively, I really was, literally.
Now I know the status of my neck- and spine. And it’s very seriously damaged…1/
#EDS #MEspine #MECFS #hypermobility
Following imaging & evaluation at @Clinica_Teknon I have been diagnosed with -

1) CCI (Cranio-Cervical Instability) and Cranial Settling.
This means that my skull, C0, is sinking down, pressing on my spine and compressing my brainstem.
2) AAD & AAI (Atlanto-Axial Dislocation and Subluxation).
This means that my C1 & C2 vertebrae are misaligned and dislocated to the left.
Read 13 tweets
Apotheken warnen vor Medikamentenengpass. Ein Problem, das #Medizinbrennt weiter verschärfen wird.
Auch wenn das BfArM noch keinen Hinweis auf versorgungsengpässe sieht, da es meistens Alternativen gibt, heißt meistens leider nicht immer. Für einen…
Gewissen Prozentsatz an PatientInnen besteht der Engpass also schon jetzt.

Gerade bei PatientInnen von #seltenenErkrankungen, für deren Behandlung manchmal eh ausschließlich "off-label" Medikamente zur Verfügung stehen, haben jetzt schon Pech gehabt.

Ich bin eine dieser
PatientInnen. Das "Glücksspiel, die notwendigen Medikamente zu bekommen" habe ich bereits letztens verloren.
Diesmal wurde ein KH Aufenthalt mein "Glück im Unglück". Aber was ist beim nächsten mal? Was mache ich nach dem kh,...?

Und ich werde bei weitem nicht die einzige sein.
Read 7 tweets
#MedizinBrennt auch, wenn die Verfügbarkeit von Medikamenten zum Glücksspiel wird.

Heute habe ich das Spiel verloren.
Eins meiner Medikamente ist aktuell nicht mehr lieferbar. Zuletzt ließ sich das Problem noch mit der Anpassung von der Dosierung lösen, inzwischen ist es gar
Nicht mehr verfügbar.
Leider hatte die Apotheke aktuell auch (ebenfalls aufgrund von Personalmangel) keine Zeit, zu schauen, ob es verfügbare Alternativen gibt (ich weiß keine).

Das #MZEB (Uni Klinik Ambulanz) brauch ich nicht anrufen. Dort erreicht man seit Wochen keinen.
Und mit #seltenenErkrankungen habe ich im ambulanten Bereich aktuell leider ebenfalls verloren. Dort braucht es leider manchmal mehr Zeit, da Behandlungen nicht alltäglich sind.
Und Zeit fehlt gerade am meisten.

Es heißt also mal wieder eine Runde "Freiflug durchs System".
Read 6 tweets
The Ehlers Danlos Syndromes (EDS) are inherited connective tissue diseases. Connective tissue is like the glue that holds your body together. If you mess it up, a lot of things can go wrong.

A brief summary of my postdoc research (🧵) for #NPAW2022

#MUSCCGS #CGSPostDoc (1) a human body depicting sysm...
For most types of EDS, we understand the cause. But for hypermobile EDS (hEDS) researchers are still unsure of why people have it, and why some people are so severely affected by it. Since we don't understand the causes or mechanisms, there are no direct therapies or cures. (2)
The goal of my work is to understand the genetic causes and biological pathways/mechanisms that contribute to the progression and manifestations people experience to develop better ways to diagnose patients and treat the consequences and comorbidities. (3)
Read 8 tweets
When we start to improve the education in the medical field on EDS and awareness in the general population it will have to naturally lead to more funding and research because people will know what it is, more will be accurately diagnosed & more people want to study it 🧵
Start at the bottom, start educating undergrads in biology and human A&P classes, start educating healthcare professionals and it will improve SO many aspects of the disease from diagnosis to research and treatments.
How do we fix education? Require students to learn it. Put connective tissue disease / EDS questions on professional exams for nurses, physical therapists, physicians, etc. If people *have* to know it, schools and programs will be forced to teach it.
Read 4 tweets
Sodium unfairly got bad rep. We need sodium in our diet. Some of us absorb too little. If you think your sodium intake may be a problem, consider adding more potassium, or lower sodium a bit, but don't try to eliminate it. Drastic reduction creates new problems. Some of us...
...may have unusual health issues that require unusual reduction.
Why add potassium if you have too much sodium? Potassium 'competes' with sodium. Some people who easily lose potassium may need to be more careful about their sodium intake.

Read 7 tweets
Thread 🧵
Being Autistic for me is so similar to having my invisible illness and being an ambulatory wheelchair user due to peoples judgements and assumptions about my disabilities and physical health.
#ActuallyAutistic #allautistics #AutismAcceptanceMonth #AutismAcceptance
(I’ve had 3 knee surgeries and will need a knee replacement eventually and I have Ehlers Danlos Syndrome and heart condition etc)
1. People say I don’t look Autistic.
People also say I don’t look sick or disabled. But it’s not something you can always actually physically see. You can’t see Autism just like you can’t see a lot of disabilities and physical health conditions.
Read 22 tweets
I'm so dissapointed in the doc who has been my best PCP for years #NEISvoid #DisabilityTwitter #EhlersDanlosSyndrome I have cci and it got significantly worse the last 2 months. I've tried to deal with it myself, but its been a major issue for pain, mobility & neuro symptoms #eds
that nothing helps. we changed from a pain patch to an injection because it give me more relief, but my symptoms persist & cause serious limitations i didn't have before. my PCP told me I had to do PT to get scans. I said okay, because this has happened before. I need 6 weeks
to get scans, which is a lot. my 1st pt was terrible [and I posted about it earlier] and my next pt is somebody I've never been with, so idk if they know eds. the only PT who I know, like, and who knows eds is booked through December. I called insurance to ask about getting scans
Read 16 tweets
whenever I ask mom to make the lights dimmer she complains being in low light will give her a headache-I ask for low light as light causes headaches/migraines/sensory overload/general asd burnout/eye pain long covid&all this triggers the pain/nausea/fatigue from other conditions
I don't want to cause anybody with any condition pain so I try to compromise. its very difficult I can't have no light [ideal & sometimes necessary for me] but I have empathy so I don't complain about her needs.
it really bothers me how every single time I ask if I can dim the lights mom has to tell me how awful it is & it always makes me feel like a bad person. the hypocrisy also hurts. having some perspective would also be nice. none of my headaches or migraines are treated w/ OTC meds
Read 5 tweets
part 5: after a bit of work I was able to transfer my perscription to a Walmart in another town. I know if I stayed with @Walgreens I would continue to have late meds, get excuses, and have my health decline. I knew id continue to go to the ER [high risk during covid] due to this
part 4: they are still messing up! they deleted my other perscription thinking it was a duplicate [it wasnt] and now 9 days after my original order & blaming everything on the supplier decided to change supplies and say it will come Monday. its a bit late now isnt it?
part 3: update on my @Walgreens problem a med that I need daily to stay out of the hospital has been ordered every day since last Friday. they told us theyd call with news & never did multiple times. never accepted responsibility either
Read 13 tweets
Spent years seeing surgeons, rheumatologist, PT , PCP, etc. for dif issues only to have to diagnose myself (my rheumatologist agrees) with #EhlersDanlos which I only could do because I am in medical school.... has this happened to anyone else? #ChronicPain #medtwitter
Kind of blown away by the response, so far over 1000 reactions in total. Feel like I am starting to get a decent sample size to show that there is clearly a lack in clinical education that prevents most practitioners from integrating issues....
With so many people being mis or under diagnosed... feels like it should be on a standard differential for people presenting with joint complaints (and other chronic disease as well). #EhlersDanlos #EhlersDanlosSyndrome #chronicpain #MedTwitter
Read 3 tweets
The Norris lab is hosting a hypermobile Ehlers Danlos Syndrome (hEDS) summer research internship program on the campus of the Medical University of South Carolina (MUSC).Those who are interested should look at the attached photos for eligibility requirements and description (1/3)
To apply, fill out an on-line application via:…

We hope those who are eligible consider applying. We need more research on hEDS and hope you will join us in our plight to discover causes of hEDS!

Eligibility and info can be found here or through the application link (3/3) ImageImage
Read 7 tweets
Systemic manifestations of Ehlers Danlos Syndrome -…

Another paper confirming what we already know: systemic manifestations including autonomic dysfunction, mast cells activation syndrome, migraine and GI symptoms are fairly common in EDS patients❗️
(TMJ is also mentioned as “extra musculoskeletal manifestation”)
Joint pain was seen in 100% of patients. When will more doctors start taking EDS seriously as a chronic pain condition?
Read 5 tweets
Thank you to @BethDarnall for speaking at #Minnesota @MinnesotaDHS #Opioid Work Group mtg on Thursday: Spoke of importance of #patientcenteredcare, #patientconsent necessary if taper & strongly advised AGAINST force tapers & using pre-determined MME'S. #ChronicPain #NoOneSize
MN #opioid Work Group created Taper Guidance. It will be out 4 public comment soon. Some areas extremely problematic. Although it states NOT 2 taper solely 2 meet system or state policy; MN Quality Improvement requires Drs 2 meet MME thresholds = TAPER TO MEET STATE POLICY. 🤔
If #ChronicPain pt wants 2 try 2 taper from #opioid analgesics 4 any reason & CONSENTS, there needs 2 be safe way 2 do it. Problem throughout U.S, incl #Minnesota; is non-consensual tapering. Many experts, incl #addiction specialists, stress dangers & even state it's UNETHICAL.
Read 11 tweets
I met with a nutritionist last weekend who asked what I do. I told her I was finishing up my PhD and the response was "wow you're so driven to keep doing this despite being so sick." 1/
Nah. I'm not driven. I was raised in a lower middle class family. I started working at 16. I worked 60 hours a week some summers to save money for undergrad. It's not about mental fortitude, it's about survival. 2/
Without a job I can't afford medical care. Some specialists in #EhlersDanlosSyndrome don't even take insurance. So if I end up on SSDI I will lose even more quality of life. I will lose the few moments of stable health I get. 3/
Read 7 tweets
1/ At least 250,000 people with chronic illnesses like #MECFS, #Fibromyalgia, #POTS and #EhlersDanlosSyndrome are currently denied thorough investigation and effective health care in the UK.
2/ This number has the potential to double after #COVID19 with many 'long-haul' patients experiencing persistent symptoms which often overlap with the abovementioned illnesses. #LongCovid
3/ More money must be invested in biomedical research into the causes and mechanisms of all chronic illness. Clearly #LongCovid gives researchers the ideal opportunity to study this, as it were, in real-time.
Read 5 tweets
Dr. Kertesz addresses the doctors who believe no one should be started on #opioids in this tweet. I'd like to chime in as well.

I believe it should be a carefully thought out decision between doctor & patient. I'm a patient that benefits from #LongTermOpioidTherapy. A few notes:
I finally got a diagnosis that isn't half-assed. I have #EhlersDanlosSyndrome, among other things. It's extremely painful. It started to set in during college. I should have know that wearing a backpack shouldn't have been excruciating. It was. I didn't go on an #opioid regimen
for years, however.

I finally tried #opioids long-term around the age of 28. I was working as a freelance photographer. Hauling equipment around became so painful, I hit a WALL around the age of 30. I had to slow down, whether I liked it or not. I got married, & after that, my
Read 10 tweets
And for my #visuallyimpaired folks, I will #type out the #text of that #image, down here. Cuz the data is #important. (one of these days I'll get all my comics done with text properly on the site)

Starts here: Hello, It's Trish Malone, creator of #NKVSSP and slightly hurty -
- artist monkey.
And it's just struck me now, so bear with me.
My forearm, right at the elbow, is needles and fire. It happens. And Overuse is the #1 suspect. Turns out today though, overuse is actually #2.

As a patient with #EhlersDanlosSyndrome, I have to be on top of, -
Read 7 tweets

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