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Press Release

REF: PR9702-02 [UPDATED AND REISSUED PR9702-01 4/2/97]

DATE: 14th February 1997

RELEASE: IMMEDIATE

LINCOLNSHIRE POST-POLIO NETWORK

UK POST-POLIO INFORMATION WEBSITE ON THE INTERNET

<URL:http://www.zynet.co.uk/ott/polio/lincolnshire/>

The Lincolnshire Post-Polio Network announces its Post-Polio Information Web Site. This represents a major step in the provision of information regarding Post-Polio Syndrome for Polio Survivors and Medical Professionals in Lincolnshire and throughout the UK. Our rapidly expanding online library offers complete text versions of articles and research papers. Catalogues are provided to assist in information retrieval.

We abide by the principles laid out in the "Health on the Net Code of Conduct" (HONCode) of the Health On the Net Foundation, an international initiative and non-profit organisation headquartered in Geneva, Switzerland, dedicated to realising the benefits of the Internet and related technologies in the fields of medicine and healthcare.

Recent Media/Press coverage:

• Radio Lincolnshire, 94.9 Breakfast Show with Chris Jones.
• Linconshire Echo [Daily Newspaper]

BACKGROUND

What is PPS?

Post Polio Syndrome (PPS) are new symptoms being experienced by Polio Survivors who recovered from Polio many years ago. New fatigue, both physical and mental, muscle weakness, joint and muscle pain, cold intolerance and breathing and swallowing difficulties. They occur in as many as 80 per cent of survivors of paralytic and non-paralytic Polio, typically 30 to 40 years after initial recovery from Polio.

Polio Survivors are typically high achievers who have worked hard in overcoming the initial after-effects of Polio. Many of us show little or no visible signs of having had Polio. Many of us have led very active lives. The message that we must decrease the over-use and stop the abuse of our damaged nerves, weakened muscles and painful joints is not an easy pill to swallow, even for the PPS aware.

Lack of awareness of PPS amongst both Polio Survivors and the Medical Profession is a genuine problem not to be underestimated. There is unfortunately no test for PPS and therefore diagnosis can only be made after all other possibilities have been excluded and by a past history of having had polio. For the majority of us the fact that we had Polio has not even been considered up to now, either by ourselves or Medical Professionals. Many Polio Survivors are under treatment regimes that increase rather than decrease the symptoms of PPS. Many who are not currently exhibiting symptoms continue life-styles that may ultimately lead to PPS.

The message should not be seen as negative, but as advising Polio Survivors that we must learn to take care of ourselves. We are not as strong as we like to think we are.

Statistics?

A population specific prevalence of 186 cases per 100,000 total population is detailed in a 1993 survey by Ahlstrom.

Serious thought must be given to the 1995 UK survey of 1200 Polio Survivors by Peter Field which reported:

"It is a fact that the rising average age of the population will result in an increase in the age of polio survivors. The findings of this survey provide statistical evidence of a reduction in the physical capability of the individual polio survivor and the inevitable attendant increase in the severity of disablement - polio is not going to leave the UK scene for some time to come and is likely to have a significant impact on the demands on Care in the Community."

Who are the Lincolnshire Post-Polio Network?

We are Polio Survivors (not Doctors) who, after years of stable functioning following recovery from Polio, are experiencing new deterioration. In most cases these problems have been gradual and medically noted (not explained) over the last ten to fifteen years. In May 1995 at a Disability Sports Day in Lincoln, an overheard remark relating to 'old polio' and breathing problems now being experienced by people who had been in iron lungs, lodged in our Secretary's memory although its significance was not appreciated until much later. In November of the same year, following nine months of consultations without any answers, she asked a new Consultant, "could Polio be the problem?" The reply that another patient who had the same symptoms also had Polio as a child, began a trail of discovery. That observation led our Secretary to embark on a personal search for more information.

In February 1996 radio broadcasts and local news items started to bring together Polio Survivors in Lincolnshire. In late July 1996 - having been put in touch with The Leicestershire Polio Network - some of us decided to form The Lincolnshire Post-Polio Network to enable us to share information with other Networks in this Country and Worldwide.

The Lincolnshire Polio Network is actively...

• collecting and collating Polio and Post Polio Sequelae related material from all over the World.
• providing the widest possible view by making all the information we collect available regardless of our views as to its content. All research is important.
• disseminating this information to All Polio Survivors by making its existence known and then responding to requests.
• campaigning for all Polio Survivors to have their new deterioration's and complex medical problems assessed by specialists in Post Polio Sequelae.
• providing this information free of charge (by way of grants) to those living and working in Lincolnshire. For those outside Lincolnshire we currently ask for postage and packing charges and a donation towards our Network.
• maintaining daily contact with Polio Survivors and Medical Professionals throughout the World.

[Note to Editors. Post-Polio Syndrome (PPS) is sometimes described as Post-Polio Sequelae (PPS), the 'sequel' to having had Polio, or as the "late effects of Polio" (LEOP).]

** END **

Contact Information

Press Enquiries: For further press information, please contact:

Hilary Hallam
Honorary Secretary

The Lincolnshire Post-Polio Network
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)
Email: linpolio@legend.co.uk

Web Site Co-ordinator:

Chris Salter
Vice Chairman

Email: linpolioweb@loncps.demon.co.uk

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

We subscribe to the HONcode principles of the Health On the Net Foundation HON, an international initiative and non-profit organisation headquartered in Geneva, Switzerland, dedicated to realising the benefits of the Internet and related technologies in the fields of medicine and healthcare.

Member of the Internet Healthcare Coalition The mission of the Internet Healthcare Coalition is Quality Healthcare Resources on the Internet.

Member of the British Healthcare Internet Association The advancement of healthcare through the application of Internet technologies.

© Copyright The Lincolnshire Post-Polio Network 1997 1998 1999 2000

Document preparation: Chris Salter, Original Think-tank, Cornwall, United Kingdom.
Primary Document Reference: <URL:http://www.ott.zynet.co.uk/polio/lincolnshire/pressrls/pr9702-2.html>
Alternate Document Reference: <URL:http://www.zynet.co.uk/ott/polio/lincolnshire/pressrls/pr9702-2.html>
Last modification: 17th September 2000
Last information content change: 26th April 2000