Polio, the forgotten condition
12:00am 13th July 2011
York’s forgotten polio community are being given new hope by a groundbreaking clinical research project.
Despite the perception that polio is a disease which has been consigned to the UK’s history books, there are 120,000 people nationwide who are living with its legacy.
The research, funded by the British Polio Fellowship, is the first-ever study into the long-term effects of polio and Post Polio Syndrome (PPS) and will provide the medical community with vital information on the true impact of the devastating neurological conditions.
The research will also provide long-awaited management solutions, thereby dramatically improving the quality of life of the UK’s forgotten patients.
Interim results from the study, which have been revealed to mark the launch of British Polio Month (1st – 31st July), demonstrate the real impact of PPS, a condition which is largely unknown within the medical profession, despite as many people in the UK living with the late effects of polio as suffer from Parkinson’s disease.
Professor Carolyn Young, consultant neurologist at the Walton Centre for Neurology and Neurosurgery in Liverpool who is leading the study comments:
“This research project is essential if the NHS is to improve the lives of tens of thousands of patients.
“Those with PPS are faced with a lack of knowledge and understanding of their condition from health professionals – the medical community has no real understanding of PPS, either of its true effects or how to effectively manage it.
“Our interim results provide strong evidence to show that quality of life for those living with PPS is significantly worse than for the wider population, and that the fatigue experienced is not only physical, but cognitive, delivering a double blow for those with the condition.
“The study is now being extended to review quality of life and fatigue over time, rather than at a single point to enable us to work to create the first-ever PPS patient self-report measures for fatigue and quality of life, which will enable us to develop effective PPS management therapies.”
Pam Jones, chairman of the British Polio Fellowship, comments:
“The tens of thousands who contracted polio in the epidemics of the 1950s are still with us and are now facing years of crippling pain and fatigue without any medical support due to shockingly low awareness of PPS amongst health professionals.
“British Polio Month is dedicated to raising awareness amongst health professionals and the wider public of the effects of polio and PPS, to ensure that those living with these conditions are supported and successfully managed by an informed medical community.”
PPS is an incurable neurological condition which occurs in up to 80 per cent of people who have contracted polio. After a long time without any significant change in their condition, people may develop new or increasing weakness, stamina problems, fatigue and pain.
The British Polio Fellowship is dedicated to helping, supporting and empowering those in the UK living with the effects of polio and PPS. The British Polio Fellowship provides information, advocacy, welfare and support to enable people to live full independent and integrated lives.
If you would like further information about British Polio Month, the British Polio Fellowship or would like to make a donation, please click here.
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