Rezultati pretraživanja
  1. Osobe Vidi sve

  2. prije 41 minutu

    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 💰 🙏🏻

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  3. 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 family, so I'm used to it, but it's breaking my heart that my son gets to see how ugly people treat

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  4. What does a panic attack look like for you? What are your symptoms? people please respond. Can I have absolute honesty here because I do not know what to think right now.

  5. prije 5 sati

    Hey 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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  6. prije 6 sati

    So good news I guess, no immediate need for surgery on my shoulder, just 3 months of intensive physio to see how that helps before he makes a decision

  7. prije 7 sati

    "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...?"

  8. I constantly feel like my head and ears are filled with air people any ideas? I keep blowing my ears 😩

  9. prije 13 sati

    how i probably sound to my doctor at this point

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  10. friends how do I stop the migraines 😩

  11. You know what? Self-care-manual wise this 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.

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  12. 3. velj

    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. 🤣 Fucking collagen disorder, at least I’m laughing at myself lol

  13. Saw described as “eternal external youth vs eternal internal age” and let me tell you that hit me HARD

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  14. 2. velj

    Was excited about for about three hours and then the sun came out. Why did I wear a black cable knit sweater and jeans?

  15. 2. velj

    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. 🤷🏻‍♀️

  16. 1. velj

    just another day!

  17. 31. sij

    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 dx. How much sooner might my health dx have been found if my clinicians had thought more abt the links between dyautonomia & anxiety?

  18. 31. sij

    For here is my Zebra 🦓 I have which can impact how I create my art. Patients with rare conditions such as Ehlers Danlos Syndrome can be classed as Zebras

  19. 30. sij

    18 months or so since last major flare. Today it's back with bells on..... *sigh*

  20. 30. sij

    When you're just hanging out and someone notices you're not quite like them 😂😂😂

  21. 30. sij

    me: “I’m gonna go to the gym everyday even if it’s just for 5 minutes” me 5 hours later: *pulls the muscles in my chest (which I didn’t even know was possible) and is in stabbing pain and it hurts to even breathe* ahh the life of a

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