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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

Apr 92 min read

BBC NEWS: Concerns over doctors ignoring effects of polio

A woman who contracted polio as a child says her doctors "never mention" the disease despite the devastating impact it is having on her health.

Sue Glyn, 72, aired her concerns as a charity called for health professionals to better understand and care for polio survivors.

The British Polio Fellowship (BPF) has launched a "pathway" to outline how good treatment, care and support can be given to people living with disabilities caused by polio.

It is estimated at least 47,000 people in the UK are living with the late effects of polio.

Ms Glyn, from Felpham, West Sussex, has a withered right leg and walks with a significant limp.

She says that when she speaks to healthcare professionals "they never mention the fact that I've had polio".

"Most of my friends go dancing, or walking or do sports and I can't do any of that," she said.

She added that doctors "don't really comment on it".

"It's like it's not there, and yet to me it's very much there," she added.

Over 76,000 cases of polio were recorded between 1932 and 1962.

This number dropped significantly after a highly-effective vaccine was introduced in 1956. Polio was eradicated in the UK, in the 1980s.

Polio survivors were left with varying levels of disability such as paralysis, a shortened or withered arm or leg, sleeping or breathing issues, or twisted and bent spine.

Kripen Dhrona, the CEO at the BPF, said: “For many years polio survivors have reported delays in diagnosis, a lack of awareness by healthcare professionals of the late effects of polio and post-polio syndrome and poor levels of care beyond specialist centres."

He said the pathway should enable healthcare professionals to "provide more effective care with earlier diagnosis, improved treatment, and better outcomes".

Mark Norman

Health Correspondent, BBC News, South East

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