GuillainBarre Syndrome should be considered as dangerous as meningitis, according to Deirdre Hussey, counsellor of the GBS support group and a past sufferer herself.
She first became aware of the illness when, as a marathon runner, the backs of her legs became sore. She put this down to extra training. When she lost power in her legs and arms, she consulted her doctor who was baffled by her symptoms. He thought she had MS, Bell's Palsy or a stroke. A lumbar puncture offered proof that she had GBS and Deirdre spent 10 months in a wheelchair, paralysed in the face and from the waist down.
GuillainBarre Syndrome is little known in Ireland despite the fact that it affects an estimated 500 people each year. This virus attacks the insulating coating of the nerves, they become inflamed and their ability to conduct is impaired, producing symptoms such as weakness and loss of sensation.
It can strike at any age - last year a four-week-old baby got it - but it is more common in the elderly and among men rather than women. It is not hereditary nor can it be caught from, or transmitted to, anybody else. However, it often develops a week or two after a sore throat, intestinal infection or food poisoning.
The symptoms sound fairly harmless: tingling or numbness in toes and fingers, and patients often have difficulty convincing their doctors that there is anything physically wrong. Within a few days however, legs will simply not bear weight, arms will become weak and tendon reflexes will have disappeared.
The worst of the illness is usually reached within two or three weeks. The patient then enters a plateau phase which often lasts a few days or weeks. During this time the course of the disease seems stationary, but most patients are confined to bed and some, if their breathing is affected, require intensive care.
GBS improves spontaneously and treatments include immunoglobulin and plasmapheresis, the exchange of blood plasma which removes harmful antibodies. Factors such as good nursing care, physiotherapy, counselling and family support can do much to aid recovery. Eighty per cent of people make a full recovery, with the disease recurring in five to eight per cent of cases.
Jacinta (36) is the mother of three young children. She contracted GBS in September 1997 and spent three-and-a-half months in hospital, including some time in intensive care. A sore throat was the trigger for the illness and early symptoms consisted of numbness and stiffness in her feet which worked upwards to her fingers and face. "It was like a stroke. You don't realise how sick you actually are. I spent days in physiotherapy learning to tie shoelaces and hold spoons." Jacinta is now in what she describes as "remission". "Basically I am on the mend, but I have no feeling in my fingers or toes and have pains in my legs and hands. I don't have much energy either and have to nap during the day."
Mae (79) first contracted GBS in 1984. The onset was gradual with symptoms similar to a cold: "I had pins and needles in my feet and always felt cold." Her doctor sent her to Blanchardstown Hospital where a common cold and even a drink problem were suggested as a possible diagnosis before a lumbar puncture confirmed that she had GBS. Her treatment consisted of steroids, plasmapheresis and nine months of physiotherapy.
Deirdre established the Guillain-Barre Syndrome support group in 1985 after hearing of the UK support group while she was ill. Support networks in the UK, US and Australia are well established and there are many websites offering treatment information and recovery stories. In her role as counsellor, Deirdre visits patients and gives talks to relatives, friends and nursing staff.
The GuillainBarre Syndrome support group can be contacted at tel: 01-8392796.