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A guide to Guillain-Barre syndrome

A guide to Guillain-Barre syndrome
Globally, polio has almost been eradicated. But there’s another strange paralysis that starts at the feet and creeps up the body. Full recovery is common, but death and disability can result. Learn more about this terrifying condition.
Three French neurologists (Guillain, Barré and Strohl) first described the syndrome in 1916 when they noticed a strange, self-resolving paralysis in two soldiers.  Three different individuals have helped me further understand it.

The footballer

Jamie Brooks was an Oxford United footballer, heading for the Premiership. The day before he was due a trial at Arsenal he contracted Guillain-Barré syndrome. What began as buckling legs gave way to total paralysis, excruciating pain and an inability to breathe or swallow. He could only shed tears.
After sixty days in intensive care, he was able to move his little finger; after three weeks he could breathe unaided. It took months of intense physiotherapy to be able to walk again. He has since played football for a local team.

The physiotherapist

Cath Peedle, physiotherapist, stresses the importance of physiotherapy to limbs—from early diagnosis through chronic illness. “Without sufficient strength to move limbs through their full range of movements (because of paralysis) the joints get stiff very quickly and if not managed loss of flexibility can persist and affect long term functions…Later on, we help with rolling, transfers, standing, walking and hand function. This can take a long time as nerves regrow very slowly.”
Physiotherapists also help with the muscles of breathing—and with the problem of fatigue years later. Many survivors struggle with excessive fatigue: one study showed that a physiotherapist-guided bicycle exercise programme reduced fatigue—along with depression and anxiety.

It's possible that the Zika virus triggers Guillain-Barré syndrome

My friend

Philip Goh, 30, first noticed an inability to pronounce the word “Edith” (saying something more like “Enith”). Over the next few days, he found himself making mistakes on his computer keyboard and his legs felt unsteady; smiling, swallowing and speaking became difficult and he was unable to close his eyes. Scary stuff.
Doctors were concerned at his lack of coordination; they ordered blood tests, brain scans, body scans and a lumbar puncture. Bedrest was prescribed and, thankfully for Philip, he recovered after several weeks. 

So what’s going on?

Dr Udo Kischka, consultant neurologist, admits that nobody really knows. In his words, “It’s one of these strange autoimmune diseases whereby the immune system turns against parts of our own body and nobody knows really why that is.” Viruses such as influenza, Zika or hepatitis E have been suggested as possible triggers; the syndrome also sometimes follows a gut infection. Many times, however, the illness appears out of nowhere.
Nerves attacked by the immune system are those controlling movement (so paralysis occurs) and sensation (so pain, numbness and tingling can result). Nerves controlling the heart and diaphragm can be damaged; heart rhythm and breathing are at risk (25 per cent of patients require a life support machine for a period).
If needed, blood can be filtered to remove the harmful antibodies, or a protein drip administered to reduce the immune attack.
Many patients make a full recovery (though it can take years). Sadly, 5 per cent of patients die and up to 20 per cent remain severely disabled: Franklin D Roosevelt’s paralytic illness may in fact have been Guillain-Barré syndrome, and not polio as is often suggested.
Helen Cowan completed a PhD in cardiac pharmacology at Oxford in 2002. She is a qualified nurse and has written for the British Journal of Cardiac Nursing, and worked as a columnist in the Nursing Times. Read more from Helen here.