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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

Oct 232 min read

BPF meet MPs to raise awareness of its Pathway

Updated: Oct 30

The British Polio Fellowship, along with polio survivors and supporters, gathered today at Portcullis House in Westminster for a drop-in event aimed at engaging with MPs and raising awareness about the charity's Optimal Clinical Pathway for Polio Survivors.

Printed copies of the Pathway, along with information and photographs explaining the Late Effects of Polio and Post-Polio Syndrome, were showcased. Attendees could examine callipers, raised shoes, and other aids used by polio survivors, while a video featuring survivors sharing their experiences was displayed on a large screen.

"MPs arrived at the event, curious to learn more and offer their support. Some MPs didn't know much about polio, but others had relatives who had contracted the poliovirus as children" commented Kripen Dhrona, Chief Executive Officer at the Fellowship.

The sponsor for the event was Liz Twist, MP for Blaydon and Consett and she was joined by other Parliamentary colleagues including:

Tim Farron MP, Westmorland and Lonsdale
Neil Coyle MP Bermondsey and Old Southwark
Dr Simon Opher, MP for Stroud
Alison Bennett, MP for Mid Sussex
Henry Tufnell, MP for Mid and South Pembrokeshire
Steve Witherden, MP for Montgomeryshire and Glyndŵr
Ayoub Khan MP for Birmingham and Perry Barr
Kate Dearden, MP for Halifax (sent a representative)
Kevin Bonavia MP for Stevenage (sent a representative)
Andrew Pakes, MP for Peterborough (sent a representative)

"We appreciate all the MPs who visited us today and agreed to reach out to the Integrated Care Boards or Health Boards in their constituencies, encouraging them to connect with the Fellowship about the Pathway" added Dhrona.

More information about the Optimal Clinical Pathway for Polio Survivors and/or a downloadable version can be found here: https://www.britishpolio.org.uk/optimal-clinical-pathway

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