Ehlers-Danlos is a Crappy thing to have
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Uploader Comments (Elfins)
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We need some sort of pill or treatment what makes us produce better collogen, come on medical people get on the ball!!!
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you sound like my mum talking, I've been told for the past FOUR years of chronic pain, painfull to walk and the docs saying there's nothing wrong with you, I started to think that I was making it up! THERE IS SOMETHING WRONG!
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Im right there with you i have Ehlers-Danlos type 3
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Good job
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im 13, and i am about to be diagnosed, and fin out if i have it or not. it scares me alot.... ive heard it gets worse with age...
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Hear hear.
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i'm really sorry to hear that. fingers crossed, and hope youre ok
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I was diagnosed just over a year ago with EDS type III, after years of suffering. Yes, it is crappy, and way under diagnosed. I really understand the hypochondriac comments too!!! I hate it when people try to pull that! I hope you're daughter is doing well!
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I totally agree with everything you said. Thanks for spreading the awareness.
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I really wish that there was something that could be done, Linda. I can see and hear the frustration and emotion in your voice. It's very humbling to watch your videos, and makes those of us that are able-bodied sit up and realise just how fortunate we are.
RobNorthampton 3 years ago
Thanks Rob :) It doesnt help as we both have health problems but my frustration is not being able to help her rather than myself. Her sleep is back to front at the moment after her pelvis went out last Tuesday hense being awake most of the night. Funnily enough I know what you mean by being fortunate because even with all her problems she actually feels sorry for other people with problems rather than herself, a testiment to her strengh and compassion for others :)
Elfins 3 years ago
Frame it, thats priceless :) My daughter spent years in the hands of mental health because ( and this is the kicker ) they didnt want her to get depressed. The trouble was that they spent the whole time trying to convince her that it was mind over matter that there wasnt a physical cause for her pain which infuriated her. They just couldnt accept that it was their treatment that was the route of her being fed up and not wanting to talk to them. Oh well, at least we dont have that now....phew :)
Elfins 3 years ago