Two years ago, in-demand musical director Kellie Dickerson realised something was wrong. Her blood pressure had been low for a while, but this was different, and it was beginning to get worse.

“First of all I noticed my balance was poor so I would stumble, and the second thing was my speech was a little slurred as if I was drunk, but of course I wasn’t. I wouldn’t drink at work,” she says.

Kellie Dickerson. Photographs supplied

“I went to a doctor and I demanded an MRI scan because I thought it was better to know than not to know, and the first one came back normal and so they said ‘you are crazy’, and I said ‘no, there is something not quite right’. Basically the last two years have been a whirlwind of doctors, with me insisting that something was not right and them saying everything was fine. And gradually the second MRI showed something not right, but it wasn’t a brain tumour, it wasn’t cancer – which is something to be grateful for – and not MS. It was this rare condition called MSA.”

MSA stands for multiple system atrophy, a progressive neurodegenerative...

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