British Polio Fellowship
The British Polio Fellowship is a charity dedicated to helping, supporting and empowering approximately 120,000 people in the UK living with the late effects of Polio and Post Polio Syndrome (PPS), a neurological condition. It provides information, welfare and support to those living with the effects to enable all to live full independent and integrated lives.
Our vision is of a society where people living with the effects of Polio and Post Polio Syndrome (PPS) have all the resources they need to lead full, active and integrated lives and of a world where Polio is completely eradicated.
The Support Services Team at The British Polio Fellowship provides key information and support for people with Polio and Post Polio Syndrome (PPS), their families and carers and healthcare professionals in the UK.
Information and support
We are available 5 days a week and provide the most up-to-date information and support on aspects of living with Polio and PPS.
All enquiries are treated in the strictest confidence and are not passed on to anyone else within The Fellowship or elsewhere, unless permission is given.
For more information please contact our Support Service Team
We can give information about:
- Issues relating to living with Polio and PPS
- Disability benefits and rights
- Healthcare professionals with an interest in Polio/PPS
- Polio vaccinations
- Useful guides, publications, websites and other information resources
- Other organisations that may be of use in particular situations
We have a wide range of information leaflets and factsheets that can be sent to you upon request.
What is PPS?
Post Polio Syndrome (PPS) is a neurological condition that can occur in people who have had Polio. After a long time without any significant change in their condition, people may develop new symptoms of increasing weakness, stamina problems, fatigue and pain.
PPS is often difficult to recognise as symptoms may develop slowly and may be mistaken for other conditions. Before making a diagnosis of PPS it is important to exclude any other conditions that could explain your symptoms.
What else do we know about PPS?
PPS can occur at any age and can be an issue for people who had either paralytic or seemingly non-paralytic Polio.
Research on who is most likely to experience PPS is not always clear and can be contradictory. Findings vary, but have shown that PPS may develop in a significant number of people with Polio.
It is suggested that PPS may affect more women than men.
People who have had fatigue or pain in the years since they contracted Polio, or where physical activity has caused extreme tiredness and pain, seem to be at increased risk of developing PPS, or may already be experiencing it.
PPS also seems to develop more quickly in people who had Polio during the epidemics of the 1950s.
What are the symptoms of PPS?
Symptoms may include the following:
- breathing problems
- swallowing problems
- muscle loss
- new or increasing weakness
- muscle fatigue
- muscle pain
- joint pain
- cold intolerance
- sleep disturbance
- general fatigue
Other symptoms, such as urinary problems, may or may not be linked to PPS.
How is PPS diagnosed?
Unfortunately there is not a single test for PPS and it is important to make sure there is no other reason for the symptoms.
A number of factors will need to be considered before a doctor can tell you if you have PPS, including the following:
- Do you have a confirmed history of Polio?
- If you don’t know if you had Polio, did you ever come into contact with anyone who might have had it?
- Do you have any physical signs of having had Polio in the past?
- Have you had a period of recovery from Polio when your condition has not changed for a long time?
- Do you experience new or increasing weakness, abnormal muscle fatigue or new loss of muscle bulk?
- Are you getting pain in your joints?
- Do you have problems with breathing, sleeping and/or swallowing, or not being able to tolerate the cold?
- Is there any other medical explanation found for these symptoms?
It may be difficult to get a diagnosis of PPS because many healthcare professionals know very little about the condition, or even about Polio. Referral to a consultant neurologist, ideally with knowledge of Polio and PPS, may be the best way to get a diagnosis and advice.
The British Polio Fellowship has more information about PPS and a list of healthcare professionals with an interest in PPS, please contact our Support Service Team.
What tests might I have?
If your GP suspects that you may have PPS, they should consider the following tests:
- Full Blood Count (FBC)
- Biochemical profile
- Creatine kinase (CK)
- Thyroid function
- Inflammatory markers (ESR, CRP)
- Rheumatoid factor
- Anti-nuclear antibody (ANA)
- Uric acid
- Routine kidney function
- Liver function
- Serum calcium
- Serum vitamin D status
If the results of these tests are abnormal, you are more likely to have another condition that needs investigation, but this does not rule out the possibility of you having PPS as well.
In addition you may be referred for x-rays of:
- Chest and spine
- Painful joints
If you have these tests and your GP is still not sure that you have PPS, you may be referred to a hospital consultant. At this stage you may have some or all of the following tests to rule out other possible conditions or confirm the likelihood of PPS:
- Electromyography (EMG) tests to see if Polio has damaged your nerves and muscles
- Sleep studies if you are having problems sleeping or feeling unusually tired
- Cardiological tests to check your heart rate and function
- Magnetic Resonance Imaging (MRI) of your spine
- Lung function tests to see how well you can breathe in and out
- Tests to investigate swallowing problems
You should remember that you may have PPS as well as other conditions, so not every health problem or symptom experienced will be related to PPS.
A brief history of PPS
Early studies showed evidence of PPS, but it was not until the 1980s that doctors began seeing more people with Polio developing increased weakness, fatigue and pain. For a long time neither patients nor doctors were looking for, or prepared to accept a connection with Polio. As a result, little research was done into any longer-term effects.
By the 1990s there was enough evidence to suggest that these new symptoms were related to the effects of Polio. Research took place to examine and understand the reasons for these symptoms. It is now known that people who had Polio may develop new symptoms years later caused by PPS.
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