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#GIVEAWAY
to win a box of goodies worth £65: retweet, follow, like & tag someone (not a company) who’d like a box too. Ends 30/1/20. Worldwide. #selfcare#spoonie#Fibromyalgia#chronicillness#ChronicPain#invisibleillness#subscriptionbox#EhlersDanlos#endometriosis pic.twitter.com/Jlf7O43wMX
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Osobe Vidi sve
@TheEDSociety The global nonprofit organization dedicated to change and progress in the world of Ehlers-Danlos syndromes and hypermobility spectrum disorders.
New York, USA • ehlers-danlos.com
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HOW do you get tested for
#ehlersDanlos ? I got diagnosed with hypermobility in 2018 and was advised to get genetic testing. I searched everywhere and only found@PennMedicine, so I left a message asking how testing works and got this in the mail. What a fucking joke! pic.twitter.com/BqbBqD9NtG
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I constantly feel like my head and ears are filled with air
#EDS#EhlersDanlos people any ideas? I keep blowing my ears
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I’ve only gone and torn the meniscus in my knees by turning over in my sleep


#lifewithehlersdanlossyndrome#eds#EhlersDanlos -
So, apparently, I have been completely ignoring the weather for too long.
#ABQ is expecting a massive snowstorm. I was unaware of this and, honestly, productive weather is less painful than the threat of precip without a result.#EhlersDanlos#ChronicPainPatient -
Ah bugger. I've got fun new pain that's breaking through the morphine. We've spent the evening playing "bladder, bowel, or ovary?". Whichever it is, I'm disinclined to spend hours being poked by medics.
#ehlersdanlos put me right off doctors.Prikaži ovu nit -
Rare diseases are often difficult to diagnose, which can have major consequences for sufferers. Read about
@robyndarcey5's experience of Ehlers-Danlos Syndrome on our latest blog here: https://bit.ly/3b1XWBr#EDS#RareDisease#ehlersdanlos -
Today on “my body hates itself,” I somehow slept too aggressively and caused my pinky to completely separate from the rest of my hand for a while before snapping back in. It now snaps in and out if I’m not careful. Solution: tape the everloving daylights out of it.
#EhlersDanlos pic.twitter.com/ZCA1WNYwWJ
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Gotta love it when you naturally wake up every night after 3-4hours sleep.
My brain just won't shut off. So exhausted. Lay down 5am to try and sleep, dislocated my jaw...ideal.
#Insomnia#EhlersDanlos -
Are there any gel ice packs out there that have been imbued with some sort of magic that makes them stay colder for longer? I can’t sleep without an ice pack because my neck and face are always on fire but all of my ice packs get warm in about 30 mins.
#EhlersDanlos#Potsie -
I've been in bad pain for 3 days. Now my arm hurts so much I want to scream.
#EDS#EhlersDanlos#ChronicPain -
Bitch this is incredibly attainable, a quick COL1A1 mutation and boom
#ehlersdanlos pic.twitter.com/Rwufk1xWJU
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Friday 31st January is the International
#DayoftheZebra! “When you hear the sound of hooves, think horses, not zebras.” “Zebras” DO exist and so getting a diagnosis and treatment can be more difficult for sufferers of rare conditions. https://www.ehlers-danlos.org/about-us/charity-aims-and-focus/why-the-zebra/ …#EhlersDanlos pic.twitter.com/sYa0qeCAjS
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“Bring it on” ? - you cannot be serious?
Instead, report to HR -
- institutionalised bullying
- did you check first for #HiddenDisability? (exercise-induced asthma;#EhlersDanlos &etc) - shaming the unfit or overweight - and WTF is that *dog* doing there with staff in scrubs? -
#EDS#EhlersDanlos friends. Does anyone else get weird white splotches on their skin on their legs when they start to get up??
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Life keeps mother fuckin. I promise you I'll keep on truckin. Leah, I got you, and no one is more prepared to get you through this than me!
#EhlersDanlos pic.twitter.com/kHQglA2vR8
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#EndTheStigma#Lupus#EhlersDanlos I have struggled with physical conditions my whole life. The often unseen consequence of that, is multiple mental difficulties. Once when a doctor told my Mother , "She's 'just' depressed!" My Mother yelled, "'JUST'?!? Who wouldn't be???" pic.twitter.com/SADMG9Y4SF
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The entire day spent at the hospital with my son.
#EhlersDanlos#EhlersDanlosSyndromepic.twitter.com/mqQN0qD3hz
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that’s right, i slipped couple ribs out of place and almost dislocated both my elbow and shoulder playing dodgeball.
#eds#ehlersdanlos -
I would love to win this fabulous prize for my teenage daughter with
#EhlersDanlos Have you seen this lovely#selfcare prize@debbieskerten#invisibleillness
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