SURVIVORS of polio are campaigning to raise awareness of a debilitating related condition which is striking decades after they first contracted the disease.

Before the introduction of a vaccine 50 years ago, thousands of children in the United Kingdom caught polio, which can cause muscle paralysis, disability and death.

Thanks to extensive rehabilitation, many of those who were affected recovered to lead active and independent lives. But years later, polio survivors are now facing a “second wave” of new symptoms related to the disease.

Post-polio syndrome (PPS) is an umbrella term covering a range of symptoms, including fatigue, muscle weakness, pains in the joints, sensitivity to anaesthetics and respiratory difficulties.

Campaigners say there is little awareness among doctors as polio was largely consigned to the medical textbooks in Britain following the success of the vaccination programme.

Yet around 80,000 people in the UK have had polio and estimates of how many of them are at risk of PPS vary between 25% and 80%.

Graham Ball, chief executive of the British Polio Fellowship, said: “It has taken a long time for the medical profession to acknowledge that PPS is a real syndrome and not just part of the standard ageing process.

“It was recognised about 10 years ago, but it is still not widely known by the medical profession. That is one of the major issues.

“Our members go to the doctor and it is sometimes just written off as ‘you’re getting old like the rest of us’. But it is not, it is more than normal ageing, and people who were able to lead quite active lives can no longer do so.”

The condition, which is not life-threatening, involves the death of individual nerve endings, but it is not known exactly what triggers PPS or who is likely to get it.

Symptoms can appear anywhere from 20 to 40 years after recovery from polio. Diagnosis is usually based on the patient previously having had polio and the elimination of other possible conditions.

Despite the lack of knowledge, Ball said “no real research” is being done to find out more about the condition.

“One problem is that people don’t know whether they are going to get it,” he said.

“A lot of our younger members are living in fear of it, as they don’t know whether it is going to affect them and the degree of disablement.

“Polio is a forgotten disease – the disease may have been eradicated [in the UK], but we haven’t eradicated the people who have got it.”

The Scottish Post Polio Network, which has more than 150 members, is currently collecting signatures for a petition to the Scottish parliament.

It states that there has been “continuing resistance” to recognising PPS and calls for a review of neurological services in Scotland for sufferers.

Agnes Walker, a founder member of the network who had polio as a child, said polio survivors had “disappeared” off the medical map after the disease was successfully tackled through vaccination.

She said: “It is not really their fault, but a lot of the doctors in this country don’t recognise it at all. When the vaccine was introduced, polio became very rare and as a consequence of that the medical profession has no knowledge of polio either. People have been told they are imagining things and that a lot of their symptoms are in their head.

“Some [survivors] also never associated it with having polio, as that was over and done with when they were younger.”

She added: “We disappeared for a while, that has been our problem.

“You just got on with your life and then you got new symptoms, like fatigue, new muscle weakness and you’re just not able to do the things you used to do. You hit the stage of where you just got on with your life and then bang, it’s like being disabled all over again.”

However, Walker said that in other countries, such as the US, Canada and Australia, the condition has received greater recognition, with multi- disciplinary clinics available for those with PPS.

She said: “When patients come to the clinic, the co-ordinator has made all the necessary appointments, for example if they need to see a physician, or a neurologist or a nutritionist, then that is all organised. That is basically what we want in Scotland – a holistic approach, that is what we are campaigning for.”

High-profile survivors of polio include actress Mia Farrow, who backed a letter-writing campaign in the US to raise awareness of PPS two years ago. Others include Franklin D Roosevelt, who became president of the US after battling the disease, film director Francis Ford Coppola and folk singer Joni Mitchell.

Science fiction author Arthur C Clarke, 87, was diagnosed with PPS in 1988 and now uses a wheelchair.