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
Letter to MP
Please feel free to edit this example letter and send it to your local MP, asking them to attend a Westminster event hosted by the BPF on Wednesday 23 October 2024.
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NOTE: You will need to insert the name of your local MP and sign off with your name.
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The letter reads:
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Dear <Name of your local MP>
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I am writing to invite you to attend an important event hosted by The British Polio Fellowship in Room R, Portcullis House, from 3:15 to 5:15 pm on Wednesday, 23 October.
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The Fellowship is raising awareness about the lifelong needs of polio survivors. Over time, many of us experience late effects of polio (LEoP), including joint deterioration, overuse injuries to stronger areas, pain, fatigue, sleep apnea, increased gait disturbance, respiratory infections, osteoporosis, osteoarthritis, falls, and fractures.
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Approximately 60% of polio survivors also develop new muscle weakness, leading to further muscle atrophy, worsening pain, fatigue, and breathing issues—a neurological condition known as post-polio syndrome (PPS).
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As a polio survivor myself, I am acutely aware of how careful management and treatment can slow the progression of symptoms, improve function, and enhance quality of life.
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It is estimated that a minimum of 47,000 people, and likely several hundred thousand more, who have been affected by polio are living in the UK today. While many are over the age of 50, mostly in their 60s and 70s, there is a growing number of younger polio survivors who contracted the disease abroad before moving to the UK. These individuals are of working age and face unique challenges.
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Unfortunately, care for polio survivors is often compromised due to a general lack of awareness and understanding among healthcare professionals, including those in primary care, about LEoP, and PPS.
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I strongly encourage you to attend the event on 23 October, after Prime Minister's Questions, to learn more about how you can support this vital cause.
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Thank you for your attention to this matter.
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Yours sincerely,
<Your name>
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