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
OUR AFFILIATIONS
ROTARY GBI
Rotary is one of the world's largest and most successful global membership and humanitarian service organisations, with 1.2 million members in over 200 countries. Our impact starts with our members — people who see a world where we unite and take action to create lasting change — across the globe, in our communities, and in ourselves. Our national and global partnerships allow us to maximise our impact. During the past 100 years, The Rotary Foundation has spent $3 billion on life-changing, sustainable projects around the world.
ONE LAST PUSH
You may think polio has gone for good, the fact is polio still infects children in hard to reach places in a few corners of the globe and until it is completely eradicated, there is always a risk it could come back.
We’re here to make the final effort to wipe it out completely.
We work closely with the Global Polio Eradication Initiative which was established in 1988 by the World Health Organisation. The Global Polio Eradication Initiative is a worldwide partnership led by national governments and spearheaded by the World Health Organisation, UNICEF, Rotary International and the US Centres for Disease Control and Prevention.
It’s the biggest public-private health effort in history, involving 200 countries, 20m volunteers and 2.5bn children vaccinated.
EUANS GUIDE
Euan's Guide makes it easier for disabled people to find great places to go. It's been described by Author Ian Rankin as 'Trip Advisor with wheels on.' It is a registered charity in Scotland.
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​Euan's Guide is used by thousands of disabled people to review, share and discover accessible places to go. "The aim of Euan's Guide is to empower disabled people by providing information that will give confidence and choices for getting out and about."
THE NEUROLOGICAL ALLIANCE
The Neurological Alliance is a coalition of more than 80 organisations working together to transform outcomes for the millions of people in England with a neurological condition. We campaign for high quality care and support to meet the individual needs of every person with a neurological condition, at every stage of their life. Our work is shaped by the experiences of people with neurological conditions and aims to address the causes of poor care.
THE PATIENTS ASSOCIATION
The Patients Association is an advocacy group operating in the UK that aims to improve patients' experience of healthcare. Established in 1963, it became a registered charity in 1991. The Patients Association works with patients directly: they are its members and supporters, and also the people who benefit from the organisation's help and advice services.
NORTHERN IRELAND POLIO FELLOWSHIP
Northern Ireland Polio Fellowship is intended to help polio survivors find out more information on the Late Effects of Polio and Post Polio Syndrome. If you go into links you’ll find many websites that have information on these subjects. Further links will be added as the site is developed.
EUROPEAN POLIO UNION
The European Polio Union (EPU) is a European umbrella organisation for national organisations that support people who have had polio and for people that are currently coping with Post Polio Syndrome (PPS). The EPU aims, by bringing all those organisations together, to strengthen their force, to learn from each other and to help each other. In some countries in Europe the knowledge and treatment of PPS is (much) better than in others and the aim is to make this more equal all over Europe. You can access their newsletters here.
THE HELPLINES ASSOCIATION
Helplines Partnership is the membership body for organisations that provide information, support or advice via phone, email, text or online.
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We are committed to supporting organisations that provide non-face-to-face advice, support and information to improve general well being. We offer training, a Helplines Standard, and consultancy to help build sustainability and promote excellence, choice and accessibility for everyone.
BLACTHFORD CLINICAL SERVICES
Blatchford is a multi-award winning manufacturer of some of the world’s most advanced prosthetic technology, bespoke seating solutions and orthotic devices.
Our evidence-based approach and commitment to continuously challenge possibilities ensures our mobility solutions prioritise the wellbeing and long-term health of our users.
Through science, technology, and a clear focus on people, we make mobility possible.
REMAP
Remap is a UK charity with skilled volunteers who custom make equipment for disabled people, helping them achieve independence and a better quality of life.
PAIN UK
Pain UK is an alliance of charities providing a voice for people in pain. We were founded in November 2011 and registered as a charity in January 2012. Since then, our membership base has grown rapidly and we now support charities dealing with all manner of painful conditions, from head to toe.
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​Pain UK believes that the world of pain policy has suffered because the charities that support people in pain are small, diversified and focused on single conditions, whereas the medical professions and the pharmaceutical sector are able to speak with one voice when required. As the national umbrella body for UK pain charities we are able to provide a single point of contact for anyone wishing to understand what it is like to be a person in pain.
DISABILITY RIGHTS UK
Disability Rights UK is a UK pan-disability charity which was set up with the aim of representing the needs and expectations of disabled people in the UK. Disability Rights UK was formed as a result of several disability charities merging in 2012.
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Disability Rights UK was formed through a unification of Disability Alliance, Radar and National Centre for Independent Living on 1 January 2012. RADAR was formed in 1977 as the Royal Association for Disability and Rehabilitation and later renamed to Royal Association for Disability Rights (RADAR)
LASA
Lasa: the social welfare law and tech charity Established in 1984, we're dedicated to using technology to support the delivery of social welfare law advice and information to disadvantaged communities across the UK. We do a whole heap of stuff to help everyone from frontline not for profit organisations to government departments (and everyone in-between) to deliver efficient, high quality services, as well as work for the direct benefit of people with social welfare law problems.
We are affiliated with a number of organisations who hold our same values and beliefs. By building these relationships we are able to ensure the work we do helps improve the lives of polio and non-polio survivors as much as possible. If you believe your organisation holds these values and that we can work together to improve the lives of those we support please contact us.
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BENEFITS AND WORK
Benefits and Work, was launched in 2002 (and became a limited company in October 2006) by advice worker turned barrister Holiday Whitehead and benefits writer and trainer Steve Donnison, to provide just such information.
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It is unique amongst benefits information providers in that it asks for no funding or support from the government, local authorities, grant making trusts or large companies. Every penny of Benefits and Work's revenue comes from its subscribing members.
