'I should have been diagnosed sooner'

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By Jane Elliott Health reporter, BBC News

Pami got polio in India

Having polio as a child left Pami Loomba with a paralysed right arm and only partial use of her right leg.

She had been given physiotherapy until the age of 16, but was then discharged from health services and learned to cope with her disabilities.

So when Pami started to suffer new health problems in her late twenties, no one linked it to her polio.

Now aged 50, the former human rights lawyer is angry her condition, post-polio syndrome (PPS) was not spotted sooner, and that it was allowed to deteriorate to such an extent that she had to give up her much-loved career.

Learning to cope

"I got polio in India, where I was born," she said.

"At that time I did not think anything else was affected and I just lived with that, but during my second pregnancy I started to deteriorate.

Every morning it was like climbing a mountain Pami Looma

"I got carpal tunnel syndrome (repetitious injury) in my left arm and my arm got weaker.

"I was losing the sensation in my left arm and I panicked about whether I would be able to look after a baby."

"It is a tremendous fear to think what little mobility you are going to have you will lose as you deteriorate."

She said she had started to find every day tasks a challenge.

"I was very tired by the time I got up, showered and ready and into work. I felt like I had done a days' work."

She added: "Things began to get on top of me including not being able to wash my hair, do my buttons or put my bra on.

"Every morning it was like climbing a mountain.

"I became very mentally fatigued and decided I could not carry on."

Missed the link

But she said her GPs still did not link it to her childhood polio.

"Nobody had said it was because of my polio or even if I mentioned it they did not discuss it. I just got painkillers and physiotherapy."

By now Pami was convinced she had post-polio syndrome and did a lot of research. She presented the findings to her GP and found her sympathetic.

"She was the first one who had listened to me," said Pami, who finally got the help she needed 13 years after her initial symptoms.

Her GP agreed to her request for a referral to a neurologist, a physiotherapist and a footwear specialist.

She learned to relax and take gentle stretching exercises, and her condition has started to ease.

Pami felt terribly fatigued

But Pami, who now works as a life coach, is angry her condition was allowed to deteriorate.

"If somebody had spoken to me after the birth of my second daughter and said 'you need to make major adjustments instead of pushing yourself' I would have saved the pain in my joints and would not have done stupid things like aerobics.

"I would have reduced my hours and might not have pushed myself through law. I think it would have been better."

Study results

A recent survey of 200 GPs has revealed that thousands could be in the same position as Pami.

The survey carried out on behalf of the British Polio Fellowship revealed that 55% of those surveyed were unable to diagnose the debilitating effects of post-polio syndrome which affects up to an estimated 100,000 people in the UK.

Graham Ball, chief executive of the British Polio Fellowship said more training is needed for GPs.

"We are obviously very concerned by these findings.

"PPS is a major problem for many thousands of people and for those who aren't diagnosed their symptoms will deteriorate.

"There is clearly an urgent requirement for GPs to be trained in the diagnosis of PPS."

Dr Steve Sturman, consultant neurologist at City Hospital, Birmingham added: "We urgently need to raise the profile of this disease and ensure that everyone with PPS is getting the treatment they need.

"Symptoms do deteriorate, but with proper management the consequences can be minimised and the quality of life can be good.

Steve Field, chairman of the Royal College of GPs, said although polio is no longer a common condition in the UK vigilance was still needed.

"The good news is because of the success of the vaccination it is not common but PPS is something health professionals needs to be aware of because of immigration from areas without the vaccination."