Steph Amir reveals ordeal with Guillain-Barre syndrome

Article downloaded with thanks from the Preston Leader

It was early September when Steph Amir’s feet started to tingle.

Then came, muscle aches, fatigue and weakness in her limbs.

The Darebin councillor tried to soldier on at first, assuming she’d just picked up a particularly nasty cold.

Then her legs stopped working.

“I couldn’t even stand up, sit down, or roll over in bed — I had to hook my hand under my knees and throw them over,” she said.

After several frustrating days, Cr Amir decided to head to the emergency room.

“I somehow managed to get from the front door to the taxi — I just got the door open and flopped sideways into the car,” she said.

After a battery of tests Cr Amir was given the shock diagnosis of Guillain-Barré syndrome, a rare disorder where nerves are attacked by the body’s immune system. Left untreated, the disorder can be fatal.

“My legs were paralysed, cold, I couldn’t move my feet or walk … it was really scary,” she said.

Concerned doctors rushed Cr Amir to the intensive care unit, fearing the paralysis could spread and shut down her lungs.

Cr Amir spoke to Leader from her Preston home, where she is making a slow and steady recovery.

The new mum was managing “minor parenting chores” and work reading, but was not expecting to return to full-time work until next year.

She shared her story in the hope of raising awareness of the rare disorder and its telltale signs.

Cr Amir spent a week at the Epworth Hospital in Richmond, including two days in intensive care and three in the neurology unit.

She said the worst were those first few days when recovery was anything but certain, with nothing to do but worry as doctors observed her.

“I thought I’m going to have to quit my job, I won’t be able to pick up my baby, I’m going to be in a wheelchair,” she said.
Cr Amir became emotional recalling visits from her partner Edwina and nine-month old daughter Frances.

“Frankie was a bit out of sorts, she wasn’t sleeping properly while I was in hospital and she was much more clingy than usual,” she said.

Epworth director of emergency medicine Dr Ron Sultana said the uncommon nature of Guillain-Barré syndrome made it difficult to diagnose.

“We might get two or three cases in a year — people presenting with a tingling in their feet and hands with a weakness in their lower limbs,” he said.

Dr Sultana said the syndrome “confused” the body’s immune system and caused it to attack healthy nerves. He said the initial “confusion” is thought to be triggered by a virus or bacteria, but scientists have yet to identify the mechanism.

Dr Sultana said most patients recovered through a mix of immunoglobulins — antibodies which “mop up foreign entities” — and plasmatherapy, which “filters” the blood and returns only clean cells. He urged anyone with symptoms to seek medical advice.

“We all have an element of ‘oh, she should be right’ — but if it doesn’t make sense or it’s something you haven’t had before, you have to assume it’s real and you need to go to a doctor,” he said.

Cr Amir faces months of physiotherapy and a long wait before she can return to her normal routine. Many sufferers report symptoms lasting for years.

“Being better means being able to get back on council, go jogging and ride my bike around,” she said.

Despite her terrifying experience, Cr Amir said she felt “more connected” than ever to family and friends who sprang into action after the diagnosis.

“My mother in law flew down from Canberra for the whole week I was in hospital and a local mums group started a food train, so we’ve ​had people dropping off quiches and lasagnes,” she said. “I’m so grateful for the support I’ve had — it’s been so lovely.”

Read more information on Guillain-Barré syndrome.

Read more at the Preston Leader​


Photo credit: David Smith​

Photo:Darebin councillor Steph Amir shares a laugh with her daughter Frances.