Fundraiser to raise awareness of rare condition

Nov 10 2011 by Alistair Watson, West Lothian Courier

A FUNDRAISING event has been held to raise awareness about a rare but serious condition.

Esther Laird thought her partner Joe Carty was just suffering from a bout of the flu when he fell ill earlier this year.

The 64-year-old had a bout of sickness and diarrhoea but woke up on March 31 feeling much worse.

Esther, from Fauldhouse, explained: “He phoned me to say he felt as if he was drunk as he was staggering about.

“He told me he had a tingling in his arms and feet.

“I thought he just had the cold or flu and told him just to stay in bed for a lie in.

“However, when I went up to the house in the afternoon and found him still in his bed I thought it was very strange as he isn’t the kind of person to laze around.

“I jokingly told him to get up and he said he couldn’t as he couldn’t feel his arms and legs.”

Joe was taken to St John’s Hospital before being transferred to the Western in Edinburgh.

After staying with him all evening Esther got a call during the night to say things had taken a turn for the worse.

“They told me Joe was in intensive care and was on a ventilator,” Esther said.

“He couldn’t breathe at that time as he was totally paralysed.

“His doctor told me he had been diagnosed with Guillain-Barre Syndrome and that his body was basically shutting down.”

Guillain-Barre Syndrome is a rare but serious condition of the peripheral nervous system which affects about 1500 people in the UK every year.

It can affect people of any age, including children.

The exact cause is unclear and there is no way of identifying who is most at risk.

However, in most cases of Guillain-Barre Syndrome, the person affected had a viral or bacterial infection a few weeks before getting the condition. It is likely that the infection causes the immune system to attack the body's nervous system.

This leads to nerve inflammation that causes muscle weakness and damages parts of nerves causing paralysis.

Most people with Guillain-Barre Syndrome make a full recovery within a few weeks or months, and do not have any further problems. Some people may take longer to recover, and there is a possibility of permanent nerve damage.

Joe’s recovery has been slow and he still remains in hospital nearly eight months after being admitted.

“He is still partially paralysed but they are starting to wean him off the ventilator and he is on a speaking valve for part of the day now.

“They tell me it could be 18 months or longer before he is out of hospital. He will need intensive rehabilitation and physio.

“The whole thing has been a living nightmare for us both. It’s horrible that your own body can do that to you. He is a painter and decorator and was working right up to the day he went into hospital.

“I had never heard of this before and there doesn’t seem to be a lot of awareness of the condition.

“It was after telling some of my friends about it that they decided to hold a fundraising event to try and let more people know about it.

“They did a fantastic job and organised a night in the Fauldhouse Masonic Hall. Margaret, Alex and Julie sold tickets, Carol-Anne did the raffle and auction and Tommy and Colin organised the singers. I can’t thank them all enough.

“We raised over £3200 which we hope to split between research into Guillain-Barre Syndrome in Scotland and the intensive care unit at the Western Infirmary.

“The staff there have been fantastic in helping Joe. The care he is getting is out of this world and they don’t get enough praise.”