Toni and David promote awareness during Rare Illness Month

SURVIVORS: Toni Louttit and David Ainley are spreading the message there is life after Guillain-Barré syndrome, a rare illness that can strike anyone. Picture: Jennette Lees

SURVIVORS: Toni Louttit and David Ainley are spreading the message there is life after Guillain-Barré syndrome, a rare illness that can strike anyone. Picture: Jennette Lees

Imagine waking up one morning with pins and needles in your feet. 

Twelve hours later you are on the floor unable to move.

You then spend five months in hospital, including six weeks in intensive care, all for a disease you have never heard of. 

This is exactly what happened when Cootamundra’s David Ainley was diagnosed with Guillain-Barré Syndrome (GBS) five years ago this July. 

Toni Louttit, also of Cootamundra, has a similar story. 

She had been cleaning bricks for the house renovation she was completing with her husband. 

She felt weak below her knees but did not think too much of it, carrying on working, however, when the weakness progressively got worse, she went to hospital. 

She ended up in hospital in Wagga and, by 9am the morning after the weakness started, she was paralysed from the neck down. 

The condition is an inflammatory disorder of the peripheral nerves outside the brain and spinal cord. 

The cause is unknown, however, it generally follows a virus. 

It affects one in 100,000 people each year and up to 4 per cent of people who contract the disease die as a result.

The condition can strike anyone at any age. 

While there is no cure, there are treatment options, which can be administered in Wagga or Sydney. 

Recovery is a long process. 

Because the illness relates to nerves, Mrs Louttit said the pain was one of the greatest hurdles to overcome.

“You are totally paralysed but you can feel everything, a crinkle in the sheet can be excruciating,” Mrs Louttit said. 

Both Mrs Louttit and Mr Ainley are now recovering from GBS, however, face everyday battles such as fatigue and lack of reflexes. 

Mrs Louttit is keen to raise awareness of the rare illness in conjunction with Rare Illness Month this month.

She wants people to know recovery is possible.

“The important thing is you can live a relatively normal life. It takes time but you can get there,” Mrs Louttit said. 

The important thing is you can live a relatively normal life. It takes time but you can get there. - GBS survivor and liaison for the area Toni Louttit

She has been appointed as a liaison for the Guillain-Barré Syndrome Foundation International. 

In this role, Mrs Louttit offers support and her personal experience to people diagnised with GBS. 

Anyone is welcome to get in touch with her by phoning 6942 6452 or emailing toni.gbs@hotmail.com.

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