Lincolnshire Echo 14th April 1998 - Lincolnshire Post-Polio Network Media Event

Media Events

Lincolnshire Echo, Tuesday, April 14th 1998

Polio Survivors thought they had left the dreaded illness behind decades ago. Now some are experiencing new symptoms. Features editor Sarah Moore reports

Fighting for a diagnosis

Lynn Hobday, Hilary Hallam, Colin Harvey and Jeff Ross thought they had got over polio and left it behind decades ago.

Like thousands of people in Lincolnshire they contracted the dreaded virus in the 1940's and 1950's before vaccines virtually eliminated it from the UK.

The illness affected them in different ways. They recovered to different degrees and have done different things with their lives - factory work, leading a welfare organisation, joining the R.A.F. and the police.

They forgot about polio.

Now they and many others who survived the virus 40 to 70 years ago are experiencing new symptoms.

They all talk about muscle problems, hitting a wall of fatigue and pain.

Mrs. Hobday [65] was the director of a welfare organisation. Polio had left her with a limp, but otherwise she had no problems, had raised a family and worked in high pressure jobs – now she feels she has been robbed of quality of life in her retirement.

Mr. Harvey [60] worked all his life, in spite of ultimately having to have an arm amputated because of polio – now he suffers from acute tiredness and other symptoms.

Mr. Ross (52) had polio when he was a toddler. He served in the R.A.F., has worked all his life, travelled the world, played football – now he can't do any of those things.

And like Mrs Hobday and Mr. Harvey, doctors have struggled to find out what is wrong with him.

Then he found the Lincolnshire Post-Polio Network which was founded to spread information about the little known, poorly understood, late developing effects of the virus which could ultimately affect thousands of people in the UK.

"At last I knew I wasn't going mad," he said.

"I was talking to people who knew exactly what I was going through because they had gone through the same thing themselves and it was such an enormous relief."

But no doctor has yet diagnosed his problem as Post-Polio Syndrome (PPS).

Many health professionals still don't know it exists and polio survivors say they are fighting for awareness of their condition in the same way that ME sufferers had to a few years ago.

In fact Mrs. Hallam is one of only a few of the Network's members whose condition has finally been confirmed as Post Polio Syndrome.

She had polio when she was five and until three and a half years ago had had a career in the police, could dance all night and went hill walking.

Now she can't. And after two and a half years of searching for a diagnosis, at last she has one.

"I feel weakness in muscles that had returned to full, normal function. I tire easily. I now walk with a cane and use an electric scooter," she said.

"But getting a diagnosis has been a huge struggle. Like so many other people I have been told more than once that it was all in my mind."

"It's only with the help of a determined GP, finding out about post-polio myself, and finally seeing a neurologist at Queen's Medical Centre, in Nottingham, who knows about the syndrome and believes in it that I have my diagnosis."

PPS can only be diagnosed by excluding every[thing] other possible condition. There is no test for it.

Mrs. Hobday, Mr. Harvey and Mr. Ross are still trying to get their diagnosis.

Mrs. Hobday, who is the Network's chairman, said: "The problem is that because the vaccine was introduced 41 years ago and was very successful, most research on polio stopped.

"To-days doctors know very little about polio because it was felt they didn't need to. It is vital that we raise awareness.

"So many post-polio sufferers say the worst thing is not knowing what's happening to them.

"Once our symptoms are given a name, we find out that there are things we can do to alleviate the symptoms and we can talk to people in a similar position.

The Network has a huge Internet site which has put Lincolnshire survivors in touch with other polio survivors and with health professionals specialising in post polio conditions worldwide.

It is also calling for the foundation of one or more UK post-polio clinics to diagnose and treat survivors' problems.

"There is a very long way to go" Mrs. Hallam said.

"All we ask is that the fact that we had polio is taken into the equation when diagnosing our problems.

"Why should sufferers have to fight for their diagnosis themselves? Doctors must be made more aware that this is happening to many, many people who need help."

The Lincolnshire Post-Polio Network
Registered Charity No. 1064177
An Information Service for Polio Survivors and Medical Professionals

69 Woodvale Avenue, Lincoln, Lincolnshire, LN6 3RD United Kingdom
Telephone: +44 (0)1522 888601
Facsimile: +44 (0)870 1600840 (Preferred - 24 Hr availability)
Facsimile: +44 (0)1522 885115 (Alternate - by prior arrangement)

WWW Site URL: http://www.ott.zynet.co.uk/polio/lincolnshire/

All Post-Polio related enquiries including requests for further information
please email linpolio@legend.co.uk
Any comments, suggestions or problems with this web site please email linpolioweb@loncps.demon.co.uk

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Document preparation: Chris Salter, Original Think-tank, Cornwall, United Kingdom.
Primary Document Reference: <URL:http://www.ott.zynet.co.uk/polio/lincolnshire/media/n9804141.html>
Alternate Document Reference: <URL:http://www.zynet.co.uk/ott/polio/lincolnshire/media/n9804141.html>
Last modification: 18th September 2000
Last information content change: 26th April 2000