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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.

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:

persistent fatigue (extreme tiredness)
muscle weakness
shrinking muscles
muscle and joint pain
sleep apnoea

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.

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.

WHO'S AFFECTED

Post Polio Syndrome only affects people who've had polio. It usually develops 15 to 40 years after the infection.

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.

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.

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

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The British Polio Fellowship
- Feb 29
- 2 min read

Rare Disease Day 2024

Thursday 29 February is Rare Disease Day, raising the awareness of people affected by rare conditions and the challenges faced.

Kripen Dhrona, Chief Executive Officer for The British Polio Fellowship joined support organisations, clinicians, parliamentarians, and industry representatives at a parliamentary reception to mark Rare Disease Day in the House of Commons, London.

There are around 7,000 rare conditions and over 3.5 million people in the UK are living with one. Polio and post-polio syndrome (PPS) are now considered to be a rare disease, not because of the condition itself, but because of the numbers affected. People with polio, late-effects of polio and PPS and their families, can face a lifetime of complex care.

This year’s Rare Disease Day event provided an opportunity to look to the future of policy for rare conditions. Liz Twist MP, Chair of the All Party Parliamentary Group (APPG) on Rare, Genetic and Undiagnosed Conditions welcomed everyone and introduced speeches from Grant Finney, the brother of Jess, a person affected by a rare condition (Klippel Trenaunay Syndrome) and how it has impacted their family.

Andrew Stephenson, Minister for Health and Secondary Care launched the England 2024 Rare Disease Action Plan and Louise Fish, Chief Executive, Genetic Alliance UK introduced the Genetic Alliance UK Rare Disease Day 2024 report which looks at the stories behind the statistics.

The 2024 England Rare Diseases Action Plan: reports on progress against the UK Government's existing 29 actions as well as introducing 7 new actions to improve the lives of people with rare diseases for the year ahead https://www.gov.uk/government/publications/england-rare-diseases-action-plan-2024#:~:text=The%202024%20England%20Rare%20Diseases,diseases%20for%20the%20year%20ahead

Genetic Alliance UK Rare Disease Day 2024 report: aims to raise awareness of statistics among the public and among healthcare professionals, but it also shares some of the stories behind those statistics: https://geneticalliance.org.uk/campaigns-and-research/rare-disease-day/stats-behind-the-stories/

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