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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
 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
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.
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Registered Charity 3104
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