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What is the outlook for cystic fibrosis?

What is the outlook (prognosis)?

Cystic fibrosis is a lifelong condition. With improved treatment there has been a dramatic increase in the survival of people with cystic fibrosis over the last 20 years or so. In the 1960's and before, most babies born with cystic fibrosis only survived for a few months or years. Today, many people with cystic fibrosis are living into their 30's and beyond. With optimal care and treatment, it is estimated that about 8 in 10 of today's children with cystic fibrosis should live into their mid 40's. With treatment, most people with cystic fibrosis can live reasonably normal and productive lives.

However, there will be times when symptoms are more severe, mainly when a chest infection develops. Even with treatment, the main risk is recurring chest infections, and pneumonia. This can have a recurring damaging effect on lung function which can get worse over time. Death in childhood or early adulthood is still not uncommon. Most people with cystic fibrosis die of lung complications, mainly respiratory failure.

Genetic counselling

People with a family history of cystic fibrosis may wish to have genetic counselling and testing to find out their risk of passing the condition on to their children. A simple test can be done to some cells which are scrapped from the inside of the cheek. The test can detect the cystic fibrosis gene which can show if you are a 'carrier' of the abnormal gene.

Further help and information

Cystic Fibrosis Trust 11 London Road, Bromley, Kent, BR1 1BY Tel: 020 8464 7211 Web:www.cftrust.org.uk
Provides information and support for people with cystic fibrosis and their carers.

© EMIS and PIP 2004 Updated: May 2004 Review Date: June 2005 CHIQ Accredited

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