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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
- Mar 29, 2022
- 2 min read

Sign up to the Priority Services Register

For polio survivors and those dealing with the symptoms of Post-Polio Syndrome (PPS) such as cold intolerance and muscle pain, it is imperative to keep warm. That is why signing up to the Priority Services Register is so important.

The Register is a free support service to help vulnerable people stay safe, warm and independent in their own home. It is offered by all gas, water and electricity suppliers and network operators (the companies that manage the electricity cables) and each has its own register. That means households with different utility companies for water, electricity and gas, will need to sign up with each.

For those registered, they can receive important services, such as priority support in an emergency, access to notice of planned power cuts or water supply issues and assistance with metre readings.

It is necessary to check the eligibility criteria before you sign up to any Priority Services Register, but in general you will need to:

be disabled or living with a long-term medical condition
be recovering from an injury
have other specific needs such as hearing or sight impairment
have a mental health condition
be of a pensionable age
be pregnant or have children under 5
be unable to speak or read English well

You might be able to sign up for other reasons, for example if you are recently bereaved or you have returned to living independently after some time in residential care.

How to register

If you live in England or Wales for a good place to start, contact:

OFGEM for gas and electricity: https://www.ofgem.gov.uk/getting-extra-help-priority-services-register
OFWAT for water: https://www.ofwat.gov.uk/households/customer-assistance/special-assistance/

If you live in Scotland contact:

PSR Scotland for gas, electricity and water: https://psrscotland.com/

If you live in Northern Ireland contact:

NI Electricity Networks for electricity: https://www.nienetworks.co.uk/help-advice/vulnerable-customers/medical-customer-care-register
Northern Gas Networks for gas: https://www.northerngasnetworks.co.uk/network-supply/priority-customers/
NI Water for water: https://www.niwater.com/customer-care-register/

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