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Worthing & Sussex Branch
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This is an article from the Daily Express


Kathy Gibson suffers from post-polio syndrome

DESPITE the perception that polio has been consigned to the UK’s history books many of its victims are still living with the disease’s long-term legacy. Up to 120,000 of British polio survivors are suffering from a rare condition which strikes long after the original illness.
Post-polio syndrome, a devastating neurological illness, occurs in up to 80 per cent of people who developed polio and causes chronic pain, fatigue and muscle weakness.
Yet despite its prevalence and impact (Parkinson’s disease affects the same number of people) few GPs are aware of it and many sufferers are misdiagnosed.
Pam Jones, chairman of the British Polio Fellowship, said: “The tens of thousands who contracted polio in the epidemics of the Fifties are still with us and are now facing years of crippling pain and fatigue without any medical support due to shockingly low awareness of this syndrome among health professionals.”
Professor Carolyn Young, consultant neurologist at the Walton Centre for Neurology and Neurosurgery in Liverpool and a leading expert on the condition, said: “Those with post-polio syndrome are faced with a lack of knowledge and understanding of their condition from health professionals. The medical community has no real understanding of it, either of its true effects or how to effectively manage it.”
This month Britain’s forgotten polio community are being given new hope by a groundbreaking research project into the long-term effects of post-polio syndrome which is aimed at providing GPs with vital information on the true impact of the condition as well as ways of treating it.
Polio is a highly infectious virus that spreads from the intestines and attacks the brain, spinal cord and breathing muscles.
Widespread immunisation, introduced in 1955, has slowly eradicated the disease here, although it continues to claim victims in areas of Africa and Asia. Travellers are urged to get revaccinated if they visit affected areas as they are still vulnerable to the virus.

Until inoculation against polio was introduced in Britain, up to 4,000 people a year caught the virus. Kathy Gibson, 63, from Cullompton, Devon, has been diagnosed with post-polio syndrome after several years of fatigue and pain in her arms and legs.
“I was diagnosed with it two years ago. It was when the pain started in my legs that I knew something was wrong as I have never had any sensation in them at all since contracting polio,” she said.
Kathy, a mother of two, had developed polio when she was four and despite undergoing intensive physiotherapy never regained the use of her legs. “I vividly remember the day I contracted polio.
“I was playing in the street with all the other children in Townhill in Swansea, when I dropped my little plastic dolly down a drain. I started crying so one of the older boys fished it out from the metal grate for me.
“I stopped crying and put the doll in my mouth. I started to feel fluey that same day and by the time I woke up in the morning I was unable to walk. It was that immediate.”
Kathy was rushed to an isolation hospital where she stayed for nine months. Her mother’s visits were restricted to her standing on a step outside the window. “The doctors thought I wouldn’t survive and believed it was worse for a mother to see her child if the child was going to die.” Tragically, shortly after her return home Kathy’s mother died of throat cancer and she and her sister were sent to children’s homes.
Despite being wheelchair-bound Kathy has enjoyed an active life including “wheelchair dancing” but the effects of post-polio syndrome have made it very hard for her to stay that way.
“I feel very alone, there’s very little advice or support out there,” she said.
Robbie Johns, 59, a retired company director from Ipswich contracted polio when he was two. “My mother had taken me to see my grandmother in Newcastle and we inadvertently travelled through a polio epidemic area.
“Initially the GP thought I had flu. It was not until I fell over at home, hitting my head badly, that the hospital noticed that my co-ordination had gone. I was paralysed. That’s when I was diagnosed. I was in isolation for seven months. One side of my body completely atrophied and the other was weakened. As I grew older I walked with a limp but I was OK. I was able to do activities like play golf.
“As time passed I all but forgot about the polio. I developed a successful career, got married and had three children. It was in my 40s that I started falling over, my legs became unstable and would simply give way. My GP recommended leg exercises and sent me to the gym. I was doing 10 miles uphill on the treadmill three times a week.
“It didn’t help and in fact the fatigue, muscle pain and lack of stamina continued. After a year of that exercise regime I could barely walk.”
Eventually he saw a physiotherapist who specialised in polio and diagnosed post-polio syndrome. “By 1997 my physical condition had deteriorated severely. I was falling down at work and losing my confidence in my ability to walk unaided.
“My GP had no experience, no training and no knowledge of this. Even the NHS physiotherapists gave me a set of exercises that were counterproductive. If I had been properly diagnosed in the first place my GP wouldn’t have prescribed the excessive exercise that he did, which caused increased muscle wastage.
“If it wasn’t for that I might well have been in a much better physical condition today. I just wish I had known about this before.
“The wrong diagnosis can do so much harm to what’s already a very hard condition to deal with.”
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The British Polio Fellowship Worthing & Sussex Branch