WHAT IS POST POLIO SYNDROME
Post Polio Syndrome is a poorly understood condition that can affect people who have had polio in the past.
Polio is a viral infection that used to be common in the UK, but is now rare.
Most people who had Polio would have fought off the infection without even realising they were infected.
Some people with Polio would have had paralysis, muscle weakness and shrinking of the muscles. But usually, these problems would have either gone away over the following weeks or months, or remained the same for years afterwards.
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Post Polio Syndrome is where some of these symptoms return or get worse many years or decades after the original polio infection.
SYMPTOMS OF POST POLIO SYNDROME
Post Polio Syndrome can include a wide range of symptoms that develop gradually over time, including:
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persistent fatigue (extreme tiredness)
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muscle weakness
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shrinking muscles
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muscle and joint pain
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The condition can have a significant impact on everyday life, making it very difficult to get around and carry out certain tasks and activities. The symptoms tend to get gradually worse over many years, but this happens very slowly and treatment may help slow it down further.
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Post Polio Syndrome is rarely life-threatening, although some people develop breathing and swallowing difficulties that can lead to serious problems, such as chest infections.
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WHO'S AFFECTED
Post Polio Syndrome only affects people who've had polio. It usually develops 15 to 40 years after the infection.
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The condition has become more common in the UK in recent years, because of the high number of Polio cases that occurred during the 1940s and 1950s, before routine vaccination was introduced. It's estimated that there are around 120,000 people living in the UK who survived Polio when they were younger. Some of these have, or will develop, Post Polio Syndrome.
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It's not known exactly how many Polio survivors are or will be affected by Post Polio Syndrome. Estimates vary from as low as 15% to as high as 80%.
WHAT CAUSES POST-POLIO SYNDROME?
The exact cause of post Polio Syndrome is unclear. It's not known whether anything can be done to prevent it.
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The leading theory is that it's the result of the gradual deterioration of nerve cells in the spinal cord (motor neurones) that were damaged by the Polio virus. This would explain why the condition can take years to appear.
Post Polio Syndrome isn't contagious. The theory that the Polio virus may lie dormant in your body, causing Post Polio Syndrome when it becomes reactivated at a later stage, has been disproven.
It's not clear why only some people who've had polio develop Post Polio Syndrome. Those who had severe Polio when they were younger may be more likely to develop the condition.
Contacts us: 0800 043 1935
Email us: info@britishpolio.org.uk
ABOUT THE BRITISH POLIO FELLOWSHIP
WHO WE ARE
The British Polio Fellowship is the only UK national charity dedicated to supporting and empowering people living with the effects of polio and Post-Polio Syndrome (PPS), a neurological condition. It is estimated there are 120,000 people living with the late effects of polio and PPS in the UK.
Many of those effected caught polio in the pandemics of the 30s,40s and 50s along with a growing number of UK residents who caught it abroad. The majority of those effected caught it as children and those who were lucky to survive were left with varying levels of disability meaning many rely on wheelchairs or callipers to maintain some level of movement and independence. The majority also suffered respiratory and heart issues related to polio with lung capacity being severely reduced.
THE SERVICES WE OFFER
The British Polio Fellowship is dedicated to improving the lives of those living with the effects of polio and PPS. We do this through offering the following services;
Our Support Services Team;
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Offers a Freephone Helpline Service, the volume of calls and emails increasing year on year, enquiries being primarily PPS and welfare related.
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A range of informative literature both for people affected by the late effects of polio/PPS and the professionals they consult are available.
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Advice, guidance and support with completion of Personal Independent Plan forms is ongoing due to the changes in legislation and many of our members on low incomes feel very vulnerable and worry that their allowance will decrease.
We Offer Grants Towards;
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Heating bills, cold in tolerance being one of the symptoms with PPS, for those who do not qualify for government allowances.
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Holiday grants are given to those who are in great need of a break with family, friends and carers.
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Essential adaptations to the home and mobility equipment.
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Grants to provide webcams for those who are elderly or isolated and to combat mental health issues associated.
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Resistance band grants to improve polio survivor’s physical health.
Further services
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A seasonal magazine is produced, the bulletin, this publication is sometimes mentioned as a lifeline for so many of our members.
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We also host an expert medical panel to allow us to give those we support the best and most up to date advice.
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Advocate and campaign for disability rights and for the rights of the 120,000 Polio survivors in the UK
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Annual event ‘The Indoor Games’ in which polio survivors from across the UK come together to compete in a variety of games, encouraging inclusivity and combating isolation.
OUR HISTORY
The British Polio Fellowship, then called The Infantile Paralysis Fellowship, was founded on 29 January 1939 by Patricia Carey, who had contracted polio aged eight, and Frederic Morena, who had contracted the disease at the age of 42, as a self-help and mutual aid society for those affected by polio. They called a meeting in January 1938 at Bloomsbury, London which was attended by 30 people and which acted as the foundation of the organisation being formed the following year. The first issue of the charity’s newsletter was published in April 1939. On 18 May 1939 a letter from Hugh Moulton, Liberal politician, was published informing the public of the formation of the Infantile Paralysis Fellowship which "seeks to help the sufferers help themselves and to afford each other mutual aid and sympathy". The letter went on to say the principal objective of the Fellowship was to help members find work and suggested that there were (at that time) somewhere between 5,000-7,000 people with the after-effects of infantile paralysis in Britain.
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Over time the focus of the charity's work has shifted due to the eradication of polio in the UK during the 1980s and the discovery of post-polio syndrome, and the fellowship's work has become more about supporting those with PPS.
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A timeline of the British Polio Fellowship 1939-2022:
The History of The British Polio Fellowship
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