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The Guardian - AU
The Guardian - AU
National
Tory Shepherd

‘It’s the only disease where you’re not supported to fight for your life’: why Kate Swaffer is demanding dementia rights

Kate Swaffer leaning on a concrete column outside
Kate Swaffer’s first symptom of younger onset dementia was acquired dyslexia. ‘I was having to look up what the word psychology meant and I was doing a psychology degree.’ Photograph: Sia Duff/The Guardian

Kate Swaffer had severe headaches from a young age. She was told she was neurotic, or a hypochondriac. She started researching what sort of psychological condition she might have that gave her neurological symptoms. But it turned out to be Arnold-Chiari malformation, a condition that required brain surgery. So Swaffer didn’t recognise the dementia symptoms when they started to appear. Just a side-effect of the ACM surgery, she thought.

“My first symptom was an acquired dyslexia,” says Swaffer, who had worked as a nurse – including a stint in a dementia unit. “I was getting numbers back to front, and letters back to front. I was suddenly spelling ‘that’ incorrectly.

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