Struck down by rare disease: About the Guillain-Barre syndrome

ST PHOTO: LAU FOOK KONG

Weakened and paralysed by Guillain-Barre syndrome, the former crane operator overcomes pain to rebuild his life

When Mr Salehuddin Khalil quit his job as a crane operator in November 2015 to take care of his wife, who was recovering from a stroke, little did he know their roles would be reversed just two months later.

On Jan 14 last year, he woke up to the start of a nightmare - one that still haunts him.

"I woke up to go to the toilet but became weak in all my joints," Mr Salehuddin, now 57, recalled.

"I felt a current running through my body from the legs to the arms.

VERY SCARED

I woke up to go to the toilet but became weak in all my joints.

I felt a current running through my body from the legs to the arms.

I couldn't move...

I was very scared.

MR SALEHUDDIN KHALIL, on that fateful day last year.

"I couldn't move. I didn't know what it was but I was very scared. It happened like lightning."

His wife, Madam Sarifa Makong, called for an ambulance, which took him to Ng Teng Fong General Hospital, where he was diagnosed with Guillain-Barre syndrome.

The disease - which affects one in 100,000 people globally - turns the body's immune system against the nervous system, impairing the transmission of nerve signals.

Most patients experience weakness or tingling sensations in the legs, which can spread to the arms and upper body.

"In some cases, the disorder interferes with breathing and is potentially life-threatening," said Dr Tan Chee Keat, head of the hospital's intensive care medicine unit.

"Initially, Mr Salehuddin was totally paralysed. Such cases - when patients become unable to do many things because of this illness - always make us very sad," said Dr Tan, who was part of the care team.

LABORIOUS AND PAINFUL

  • One in 100,000 affected globally

  • People with Guillain-Barre syndrome can lose their strength and mobility.

    In this rare disease, the body's immune system attacks a part of its own nervous system, instead of foreign and invading organisms.

    This impairs the body's ability to transmit nerve signals properly and can be fatal if the muscles that control breathing are paralysed.

    Globally, the disease affects roughly one in 100,000 people, regardless of age or gender.

    The exact cause is unknown.

    It usually sets in after an infection, according to the World Health Organisation.

    In some cases, it had been triggered by an operation or vaccination.

    Patients are treated with immunoglobulin therapy, where proteins that the body naturally produces are injected. This is done during the acute phase.

    Patients have to undergo rehabilitation to build up their strength and regain mobility.

    Though most patients eventually recover, some continue to experience weakness, while three to five per cent may die from complications such as cardiac arrest.

    Raynold Toh

The disease is rare. The hospital has encountered only four cases of the illness in the past 19 months.

The cause of the disease is still unknown. Most patients recover eventually, though some will still experience weakness.

For Mr Salehuddin, recovery is an ongoing process which, at times, is laborious and painful. For the first four months, his family struggled to communicate with him.

"I couldn't talk or move any part of my body except for my eyes," he said, adding that his mind was alert all this while.

His family - he has four adult children - found a way around this problem with the help of a speech therapist.

Madam Sarifa, who is in her 50s, said: "We had a chart with the English alphabet and we would point to each letter to spell out the words he wanted to say."

Mr Salehuddin said: "I'd move whatever part of my body I could control, such as my jaw or eyes, to tell my family members that they were pointing at the wrong letter.

"If I kept quiet, it meant they were pointing at the correct letter."

The family also created a list of common phrases that he used, such as "feeling cold" or "extra pillow", to facilitate the interaction, which Madam Sarifa described as "very taxing and time-consuming".

But this turned out to be the least of his problems, as there were episodes during his treatment that were "very painful".

At times, he had to be put on a ventilator to assist his breathing.

When doctors tried to reduce his reliance on the machine, he found it hard to breathe and had trouble sleeping at night.

He underwent a tracheotomy, where a tube was inserted into his windpipe through an opening in his neck. This opened a blocked airway and enabled him to breathe.

But Mr Salehuddin found the strength to persevere with his treatment - which cost about $300,000 before subsidies - with the support of his family, his faith and the hospital's care team and facilities.

NOT GIVING UP HOPE

He was shown videos of Guillain- Barre syndrome survivors and was often taken out to the garden next to the integrated intensive care and high dependency ward, where he could see the cranes that reminded him of his previous job.

Dr Tan said: "It's about giving him hope and telling him not to give up."

Indeed, Mr Salehuddin told himself not to give up hope. "I knew I had to survive for my children."

Despite the severity of his condition when he was first admitted to hospital, he has regained his speech and moves around on an electronic wheelchair that he controls with his right hand.

Dr Tan said: "He is progressing well in his recovery. We hope that, with physiotherapy, he will be able to walk again." He added that the recovery process could take nine months to a year, or even longer in some cases.

The disease can affect people of any age or gender. But Mr Salehuddin has never once asked: "Why me?"

He said: "It has made me a more courteous person and brought my family closer."

A version of this article appeared in the print edition of The Straits Times on April 18, 2017, with the headline 'Struck down by rare disease'. Print Edition | Subscribe