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Wednesday, May 20, 1998 Published at 03:22 GMT 04:22 UK

Health: Latest News

On call: The future of cystic fibrosis care

Pam Tansey has been with the unit for two years

Pam Tansey is the sister in charge of the cystic fibrosis unit at Papworth Hospital in Cambridgeshire. More than one in 2,500 are born with CF, a genetic disorder that affects the lungs, the pancreas and other tissues. Sufferers experience repeated chest infections and digestive disorders.

The Papworth unit has more than 100 CF patients on its books, all of whom are aged over 16. It is a growing area of care as aggressive therapy and new treatments - including transplantation - extend the life expectancy of sufferers. Pam Tansey is on call for BBC News Online:

We're always impressed by the resilience of these patients. The treatments they undergo are tedious and can involve frequent visits to hospital.

[ image: Papworth is a regional centre of expertise]
Papworth is a regional centre of expertise
Like many patients with what is essentially a chronic disease, they know more about their condition than you do - after all they live with it 24 hours a day.

We aim to provide a very patient-focused service here at Papworth. It is essential that patients know they can trust us, as we will be treating them over a great number of years. At the new purpose built unit we also aim to try to fit in the treatments around the lives of CF patients, and thus reduce the disruption to their lives.

Increasing demand

Adult centres like the one that was first established at Papworth in 1993 represent the future of CF care. We're currently looking after 107 patients.

[ image: Our patients are just entering adulthood]
Our patients are just entering adulthood
They come from all over East Anglia - from Leicester in the north, right round to Norwich, London and Luton - and in the two years I've been working here, we've grown enormously.

It's going to have big financial implications, of course. The aggressive therapies we use aren't cheap.

That said, everything depends on the quality of care received by very young children. Everyone with CF is born with normal lungs; it's only later problems set in - and rapidly. So it's vital the disease is caught as early as possible.

New developments

We have a head start in East Anglia because every new-born baby is tested for CF as part of the Guthrie heel prick. Even those who are just carriers of the recessive gene that causes CF will understand their situation and the implications of having children.

[ image: Patients love the quiet surroundings]
Patients love the quiet surroundings
This is also an exciting area for new developments. CF is regarded as a promising test case for gene replacement therapy and we're currently doing research on alpha-1-antitrypsin, a protein which defends the lungs from damage. This research is in collaboration with the people who produced Dolly the sheep; they have also managed to produce sheep who make human protein in their milk.

Papworth has always been very popular with patients and staff because of its picturesque grounds which include a large duck pond. Who knows, maybe we'll soon have a field of sheep here as well.

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Internet Links

Cystic Fibrosis Education & Information Web Page

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Cystic Fibrosis - Scientific American

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