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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

Nov 17, 20232 min read

Big member survey produces interesting results

In March and April of this year, the British Polio Fellowship conducted a Big Survey of its members and over a thousand people responded. The results suggested support and guidance for polio survivors is needed more than ever.

Over the years there has been a rise in polio survivors being diagnosed with Post-Polio Syndrome (PPS) and yet, GPs and consultants are becoming increasingly uninformed about the condition.

Closer collaboration between healthcare professionals and the British Polio Fellowship, has resulted in the creation of an Optimal Care Pathway for people effected by polio (including late effects of polio and PPS). The pathway will be launched early 2024.

Additionally, a significant number of members don’t fully know what post-polio treatment they need or they aren’t satisfied with the local services they have available. This alone has demonstrated the importance of the Fellowship’s work. It must raise awareness of late effects of polio and PPS, and continue to support members; physically, financially, and psychologically.

Key findings from the survey can be found here

Survey Highlights

Age Range of survey respondents: 26 – 94 years

How old you were when you contracted polio?

2 - 5 years: 36%
13 - 24 months: 21%
0 - 12 months: 19%
6 - 10 years; 16%
11 - 20 years: 6%
20+ years: 2%

GPs and consultants seen by members who know about polio, late effects of polio and PPS

50% of GPs and 52% of consultants knew about polio
30% of GPs and 44% of consultants knew about late effects of polio
32% of GPs and 44% of consultants knew about PPS

Members who have or think they have PPS: 89%

If you have used these local services, were you satisfied with them for your polio matters?

	Always	Never or only sometimes
Physiotherapists	25%	75%
Orthotics	37%	63%
Podiatry	56%	44%
Orthopaedic	33%	67%
Neurologist	38%	62%
Cardiologist	45%	55%
Occupational therapy	33%	67%
Dietitians	16%	84%
Respiratory	38%	62%
Weight management	16%	84%
Rehabilitation	30%	70%
Sleep disorders	28%	72%
Psychology	8%	92%

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