How Bad Can Ehlors-Danlos Syndrome Get? Really, Really Bad

[Cort]

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 (!).

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


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Read more: http://www.dailymail.co.uk/health/a...-pain-wishers-raise-70-000.html#ixzz3Wq9y2LwI

 

[Issie]

Yes, it can get bad. Nina is a friend of mine. She will be in the USA having surgery to try to help with her issues this week. She is coming from outside of London. The medical system there wasn't able to operate on her. A big fundraising has occurred and the doctor in NY is working with her to do the surgery. Nina also has POTS. We hope that will improve too when she has her head stabilized. It's, from what I understand, so wobbly it's like she is decapitated. I hope all goes well with the fusions and stabilization. We can't get over having EDS, but it's good maybe some of the worst things that could possibly happen to us, has doctors willing to help us. Here's hoping for GOOD NEWS Nina. Hang tight!!! Im hoping life is about to start improving for you.

Issie

 

[Cort]

Apparently her operation was successful thank god

http://www.ninasneed.com/successful-operation-nina/

 

[Issie]

Yes. I hope she recovers well and gets her life back.

She is a sweetheart, always concerned about others despite her suffering. It will be wonderful for her to be able to be upright and functioning again. So much she has learned and more to learn - now she has the chance.

Issie

 

[Issie]

I heard from Nina. She is recovering. It's a slow go, but she is already seeing improvement. She said she couldn't believe how painful the surgery was. But she feels it will be worth it.

Issie

 

[Cort]

I heard from Nina. She is recovering. It's a slow go, but she is already seeing improvement. She said she couldn't believe how painful the surgery was. But she feels it will be worth it.

Issie

Thanks for the update. I imagine there are no easy answers until they get to the bottom of the connective tissue problems.

The NIH does not track Ehlor's Danlos Syndrome spending by the way.

 

[Issie]

I'm so very sad. I had not heard from Nina in awhile. Last time I talked to her she told me she was having a very hard time of recovery. And she had a hard time being on her computer. Since I have EDS too, she offered to look at my x-rays and tell me what she saw. (She always wanted to help others and no matter how bad she felt - she was kind and caring.) I just learned Nina went to sleep in death in Jan. She is no longer in the pain she experienced daily. It's very sad that she fought so hard for help and even though she finally got surgery - she still didn't survive. I will miss her. Here is the post from her mother.
https://m.facebook.com/ChiariJourney/posts/1982696761998399
My deepest condolences go out to her parents and those who loved her.
Issie