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Health Contents:  Medical notes

Monday, 23 January 2006, 02:39 GMT

Therapy for fatal nerve disease

Motor neurone disease patient testing new therapy A simple ventilator and face mask could extend the life of motor neurone disease patients, research suggests.

A team from the University of Newcastle-upon-Tyne found quality of life was improved, and life expectancy boosted, in some cases by years.

MND, an incurable disease of the nervous system, is fatal within 14 months of diagnosis in 50% of cases.

Details are published in the journal Lancet Neurology.

"It may not sound much, but six extra months is a long time for someone with MND and their family"
Dr Kirstine Knox

There are currently 5,000 people living with MND in the UK.

The condition often leaves people unable to walk, talk, or even feed themselves, but their intellect and senses usually remain unaffected.

Average life expectancy from onset of symptoms is just two to five years.

Just one drug is currently licensed to treat the disease, and it only extends life by two to three months.

The new technique, called non-invasive ventilation (NIV), works by helping people with MND who have weakness of the respiratory muscles.

It can help them to maintain adequate blood oxygen levels and clear their lungs of carbon dioxide build-up.

This allows the patients to get a restful night's sleep and signficantly boosts the quality of their lives.

It also boosted life expectancy by an average of six months in trials.

Big help

Don Setford, 76, of Hayward's Heath, West Sussex, was diagnosed with MND in 2003.

He has been using NIV for over two years.

He said: "I'd been unable to sleep at night and was waking almost 40 times an hour.

"I was not taking in enough oxygen and not breathing out waste gases properly.

"As a result I felt dreadfully ill. It was like one of the worst hangovers I've ever had, every morning.

"I started having hallucinations during the day because I wasn't getting enough sleep.

"I couldn't get my head straight and without NIV I'm not sure I would have managed. I probably would have given up by now."

Dr Kirstine Knox, of the MND Association, said: "It may not sound much but six extra months is a long time for someone with MND and their family.

"This a significant move forward in our understanding of how to treat MND, and I hope doctors take note and prescribe NIV, where appropriate, to their MND patients."

The MND Association, which part-funded the research, will now be urging the National Institute for Health and Clinical Excellence to consider recommending that NIV is offered to all MND patients.



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Related to this story:
Cell toxin link to nerve disease (29 Dec 03 |  Health )
Gulf war linked to motor neurone (22 Sep 03 |  Health )
Motor neurone gene therapy boost (08 Aug 03 |  Health )
Gene clue to motor neurone (03 May 03 |  Health )
Motor neurone disease (20 Aug 01 |  Medical notes )

RELATED INTERNET LINKS:
MND Association
Lancet Neurology
University of Newcastle-upon-Tyne
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