'I want to show it's possible to live a happy and full life with polio...' FOR many, the introduction of a polio vaccine in 1955 made the paralysing disease a horror of the past, but for some, it has left a legacy that cannot be ignored. Clare Hutchinson spoke to one woman with a little-known but devastating condition - post-polio syndrome.
IN the summer of 1957 Dr Margaret Elmes had just graduated from medical school, was pregnant with her first child and, at 25, had her whole life before her.
While the polio vaccine had been introduced two years before, it was still only available to children, and pregnant women were due to start receiving the jab the following year.
"If it had been a year later I would have been fine," said Margaret, now 78, and living in Dinas Powys.
"But as it was, I was admitted to my hospital's maternity unit because, at first, they didn't know what was wrong with me."
When Margaret began to struggle moving her arms and legs to cope with simple tasks, doctors in London diagnosed her with polio and kept her in isolation for six weeks before transferring her to the Royal Orthopaedic Hospital, in Stanmore, which is still on the same site south of Watford in Middlesex.
The disease had paralysed the muscles in both her shoulders, half her chest and stomach and in her left leg, making it hard to move.
Gradually Margaret recovered and four months later she gave birth to a healthy baby daughter before moving house with her husband Peter, an expert in lung diseases, to Belfast, where he had been offered a consultant position at a hospital.
"The polio was always there at the back of my mind," she said. "But on the surface I was able to lead a normal life."
Over the next 40 years Margaret brought up three children, John, now 49, David, 46, and her first child Ann, who sadly died when she was 40.
With her medical training Margaret became a research assistant, gaining a PhD in 1974 - one of the few women at her Belfast college to do so.
"I was a little affected by the polio, but not much," she said.
"I could walk very well and run a little bit. People only noticed something was wrong if I had to go up and down stairs and it wasn't painful."
In 1976 Margaret and her family moved from Belfast to Cardiff, where Peter was appointed director of the Pneumoconiosis Research Unit at Llandough Hospital, where he stayed until 1981.
It was in Cardiff that Margaret's paralysis began to gradually worsen.
"We knew that my disability was going to keep on getting worse," she said.
"I was beginning to notice I was having trouble walking up the steps to the University Hospital of Wales, where I was working, and I kept having to rest up after exercise because my muscles were very, very painful."
Margaret is now suffering from post-polio syndrome (PPS) of which little is known.
According to the NHS, PPS affects 20-66% of people who have had polio and generally develops between 10 and 40 years after the initial illness, with symptoms taking an average of 30 years to develop.
One theory is that the polio virus may lie dormant after the original infection because the sufferer's immune system has not completely destroyed it.
At a later date, the dormant virus may become reactivated, although it is not known what triggers this reactivation.
Other theories suggest that PPS is the result of damaged nerve cells that gradually deteriorate over time.
In recent years PPS has become more common in the UK, largely due to the high number of polio cases during the 1940s and 1950s.
Margaret, whose symptoms have steadily grown worse over the past seven years, yesterday attended an awareness event at the Senedd in Cardiff Bay where she told ministers and Assembly workers about her condition.
She said: "I had heard about PPS from a group here in Dinas when it was only first coming out. I looked it up and thought 'this must be it'.
"Many GPs don't know anything about PPS so awareness is something that needs to be tackled.
"Until very recently it wasn't quite accepted that there even was a condition like PPS but now the few specialists who exist are overwhelmed with demand."
In 1981, as her condition began to worsen, Peter and Margaret built a specially-designed house on land next to their old home on the outskirts of Dinas Powys.
She said: "At the time we lived in a three-storey house on our own so we decided to build on its paddock.
"This house is designed with my disability in mind and it means I can get around much more easily."
One of the last things Peter built before he died in 2003 aged 80 was a swimming pool to help his wife combat her paralysis.
Margaret now lives on her own with her 13-year-old tabby cat, Amber, but she knows that she is far luckier than many other PPS sufferers.
The few modifications to the house include a stair lift, raised toilet seat and an armchair that can be electronically raised - much like any other pensioner's home.
She has carers most days of the week as well as a gardener-handyman to do jobs around the house.
The opera-enthusiast and amateur genealogist also has a mobility scooter to ensure she gets to all the opening nights at the Wales Millennium Centre.
She added: "It can be a hassle getting to places. You have to think about how you are going to get there and what the access is like when you do get there, but I want to show people that it is possible to live a happy and full life with polio.
"It is not the be all and end all."
PPS FACTS POST-POLIO syndrome is a neurological condition which can occur in people who have had polio.
After a long time without any significant change in their condition, people may develop new or increasing weakness, stamina problems, fatigue and pain.
The British Polio Fellowship estimates that in the UK today approximately 120,000 people are living with PPS. However, with only 55% of GPs able to diagnose the symptoms and 18% not knowing how to treat PPS when diagnosed, that number could be far higher.
Dr John Hooper, chief executive of the British Polio Fellowship, said: "Although polio is largely eradicated in the UK, the threat of PPS still remains a significant one.
"It is often difficult to recognise, as symptoms may develop slowly and may be mistaken for other conditions and we are communicating with GPs to make them aware of the symptoms to look for.
"The developing world is still plagued by polio and the increasing trends to travel and migrate to and from these countries poses a real problem.
"Many citizens have moved to the UK after the age we vaccinate our children and then travel to their country of origin for family visits - running the risk of contracting the illness and bringing it back to the UK."
To mark the start of British Polio Week from July 3-11, the British Polio Fellowship has announced plans to update and expand its information on PPS to help generate further awareness of the condition within the medical profession and the public.
* Dr M trying t Margaret Elmes was diagnosed with polio in 1957. Now, years later, she is suffering the effects of post polio syndrome and is o raise awareness of the little-known condition
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|Publication:||South Wales Echo (Cardiff, Wales)|
|Date:||Jul 8, 2010|
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