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ME/CFS SOUTH AUSTRALIA INC

Registered Charity 3104

Email:
sacfs@sacfs.asn.au

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Modbury North,
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ME/CFS South Australia Inc supports the needs of sufferers of Myalgic Encephalomyelitis, Chronic Fatigue Syndrome and related illnesses. We do this by providing services and information to members.

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Narina Carter's Rare Disease Causes Her Disability, But NDIS Says No To Funding

Saturday 29 June 2019

 

From Australia's ABC News:

 

Narina Carter
PHOTO: Narina Carter was told her rare connective
tissue disorder didn't meet NDIS requirements.
(ABC News: Claire Lindsay)
 

Narina Carter's rare disease causes her disability, but NDIS says no to funding

ABC Coffs Coast By Claire Lindsay
29 June 2019
© 2019 ABC.

Narina Carter suffers from a rare genetic condition which causes her body to create faulty collagen.

Her symptoms are painful and include seizures, cognitive and speech problems, dislocations, respiratory problems and chronic fatigue.

The condition — Hypermobility Spectrum Disorder, or Ehlers-Danlos Syndrome — makes even the simplest of tasks, like doing the dishes, a challenge.

She said she had to break it into "several stages and I have to rest in between".

"Sometimes I literally lie down in between, just so I can get that job done without having a seizure," Ms Carter said.

 

Full article…

 


 

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