Ehlor Danlos syndrome (hypermobility syndrome) causes a weakening of collagen in your connective tissues. There's a substantial overlap between it, ME/CFS and POTS.
How bad can it get? This young womans connective tissue is so weak that her brain stem is gradually being crushed by her skull (!).
How bad can it get? This young womans connective tissue is so weak that her brain stem is gradually being crushed by her skull (!).
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A young woman whose brain stem is being gradually crushed by her skull is set to undergo life changing surgery. Nina Parsons' suffers from Ehlers-Danlos Syndrome, which is causing her head to sink into her neck.
Her condition is so severe that she has shrunk an inch and a half in the last two years - dropping from 5ft 5½in to just 5ft 4in. The rare agonising condition, which weakens the collagen in her body, means that the former make-up artist spends most of the day confined to her bed.
'The long-term prognosis is deterioration resulting in seizures drop attacks and eventually paralysis. 'The smallest journey is living hell, inflicting vibration and jarring to my body, so even hospital appointments are huge pain filled ordeals.'
'I wear a cervical collar a large proportion of the time to enforce restricted movements. Sudden movement and over stressing my ligaments and joints could be catastrophic.
'This is due to almost 24 hour pain, severe migraines, neurological problems, not being able to focus or move my eyes, numbness, weakness, pain that radiates from behinds my eyes and the back of the skull, from my neck into my shoulders and arms and further down my spine.
'Put simply, my ligaments do not support my spine, my spine moves, my head slides and wobbles and my brainstem is stretched and compressed and is causing catastrophic damage to my body.
'Each movement I make causes more and more damage, resulting in more impairment and generating more disabilities. I am constantly bed ridden and I am in so much pain.'
Read more: http://www.dailymail.co.uk/health/a...-pain-wishers-raise-70-000.html#ixzz3WqByah6j
Read more: http://www.dailymail.co.uk/health/a...-pain-wishers-raise-70-000.html#ixzz3WqBkV2Xe
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Read more: http://www.dailymail.co.uk/health/a...-pain-wishers-raise-70-000.html#ixzz3WqBGMUUn
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Read more: http://www.dailymail.co.uk/health/a...-pain-wishers-raise-70-000.html#ixzz3Wq9y2LwI