Published Date:
11 September 2009
By Jo Thewlis
With slurred speech and a wobbling gait, Susan Guest is often accused of being drunk as she walks through Bury St Edmunds town centre.
But Mrs Guest, 57, is one of a handful of people in the county who suffer from a rare condition called Ataxia, which affects co-ordination and balance.
Mrs Guest, of Bockhill Road, Bury, said: "I feel embarrassed sometimes when I'm in town because you wobble and people think you are drunk.
"I want to say 'I'm not drunk, I've got Ataxia'."
It was in 2005 that Mrs Guest, a former barmaid at the One Bull pub, in Bury, started to notice she was shaking and losing her balance and was diagnosed with a genetic form of the rare condition, which affects the cerebellum in the brain.
Mrs Guest said: "I was devastated.
"I had trouble accepting it because I thought 'I'm a big, strong girl, why should this happen to me?'"
Mrs Guest has been questioned by a policeman and has also been challenged when trying to buy a drink in a bar as staff thought she was already drunk.
She said: "You get frustrated with yourself but you just have to get on with it because life is for living.
"It is terrible when you can't do simple things like make a cup of tea anymore."
As both her mother and grandfather had suffered from the condition, Mrs Guest advised her sister, Joy Seeley, 62, of West Road, Bury, to be tested, which, unfortunately, brought the same diagnosis.
There is currently no cure for the condition which is progressive and can eventually force sufferers to use a wheelchair.
But far from accepting their fate, the sisters joined an Ataxia UK support group in Ipswich, where they met fellow sufferer, Carol Reading, 55, from Rushbrook Lane, Bury.
The threesome plan to promote International Ataxia Awareness Day on September 25 to improve knowledge of their situation to ease the embarrassment which can often accompany their condition.
The women all have special cards which explain their condition to those who challenge them about their behaviour, but they often find it annoying they are asked to justify their behaviour.
Mrs Reading said: "Because Ataxia is rare, people don't know about it. It controls you, you can't control it. If more people understood the condition, it would make things much easier.
"Why should I be questioned when I'm just trying to do my own thing?"
For more information about Ataxia, visit www.ataxia.org.uk
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Last Updated:
10 September 2009 2:27 PM
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Source:
Bury Free Press
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Location:
Bury St Edmunds