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Osobe Vidi sve
Ovjeren akaunt@lequipedusoir En direct du lundi au vendredi de 19h45 à 20h45 puis de 22h30 à minuit sur
@lachainelequipe. Une émission présentée par Olivier Ménard. (redif. dès minuit)#EDSParis, France • bit.ly/2c2bMXJ
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#CCI#EDS friends, I’d love to know your experiences - the good the bad and the ugly. Of C1 / C2 fusion surgery. (Possibly C0). Also anyone had their c1 lateral mass reduced to release the jugular? I have surgery in a few weeks if I can raise the
pic.twitter.com/czEuYqYymtPrikaži ovu nit -
My son got diagnosed with a rare vascular autoimmune disorder. He's already been accused by the school and others of "faking" & "over-exageratting". We're also a
#EDS family, so I'm used to it, but it's breaking my heart that my son gets to see how ugly people treat#RareDiseasePrikaži ovu nit -
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Hey
#EDS friends, What type of doctor confirmed/diagnosed your EDS? After repeatedly reinjuring myself in the same places, it might be worth looking into. Not that I need something else to manage
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#AbleismInFourWords "You don't look sick..." "It's just growing pains..." "It's in your head..." "You should try harder..." "Stop being a hypochondriac..." "You should be exercising..." "Do you eat properly...?" "Your putting it on..." "You get support, right...?"#ME#EDS -
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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You know what? Self-care-manual wise this
#EDS diagnosis is doing me good. Providing healthcare-wise it hasn’t helped me even in the sightest
50% of the time I’m explaining what EDS is, the rest of the time ALL my symptoms are “blamed” on it.Prikaži ovu nit -
I want to stretch to relieve pain, but if I do my body will get too stretched out to hit the gym and I’ll dislocate something. It sounds insane, but this is real life.
#eds Fucking collagen disorder, at least I’m laughing at myself lol -
Saw
#EDS described as “eternal external youth vs eternal internal age” and let me tell you that hit me HARDPrikaži ovu nit -
Was excited about
#spring for about three hours and then the sun came out. Why did I wear a black cable knit sweater and jeans?#EDS pic.twitter.com/VcjJELBmu5
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If you try to make me sign up as an organ donor & I’m like NO THANKS, doesn’t mean I’m “selfish”. I received blood transfusions, I can’t give blood. EDS ruined my tissue & organs, I’m on 10 different meds. I can’t be used. That’s why I say no. Don’t bother.
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Food for thought: Anxiety disorder dx by the time I was 14- yet my dysautonomia dx didn’t come until nearly a decade later, accompanying an
#EDS dx. How much sooner might my health dx have been found if my clinicians had thought more abt the links between dyautonomia & anxiety? -
For
#InternationalZebraDay here is my Zebra
I have #EDS which can impact how I create my art. Patients with rare conditions such as Ehlers Danlos Syndrome can be classed as Zebras pic.twitter.com/qDUOwjqOxH
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18 months or so since last major
#EDS#EhlersDanlosSyndrome flare. Today it's back with bells on..... *sigh*@ehlersdanlosuk -
#EhlersDanlosSyndrome#EDS#EhlersDanlos When you're just hanging out and someone notices you're not quite like them

pic.twitter.com/NXy8HLtmRa
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