Undiagnosed and rare conditions
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Anyone else diagnosed with ADEM?

SunshineLouSunshineLou Member Posts: 93 Pioneering
I was diagnosed with ADEM in 2014. 

Acute Disseminated Encephalomyelitis.

Admitted to hospital unable to breathe for myself. I was comatose for 3 weeks. Completely paralysed on waking. 
I spend 4 months as an inpatient and had to have intensive Physio. 
High dose steroids gave me movement back and led to feeling returning in all of my limbs (eventually).
I’ve been left with many residuals and permanent physical disability.
Just wondered if anyone on here has the same?
As an adult suferer (this mainly affects children) I’m apparently about 1 in 4 million!
The incidence in children is 4 in a million.

There’s various groups online and Facebook etc... but I’m still to find some more people in the Uk (adults) with this very rare Neuro-Immune Disease.

Think MS but a severe one time attack.


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