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Saturday 30 August 2014

Children with CF now live 20 years longer than before

Caroline Crawford

Published 28/03/2014 | 02:30

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Joe Brolly his friend and kidney doner Shane Finnegan. Photo: David Conachy
Joe Brolly his friend and kidney doner Shane Finnegan. Photo: David Conachy

A CYSTIC fibrosis (CF) specialist has revealed how children born with the illness today could live more than two decades longer, thanks to significant improvements in treatment.

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Dr Barry Linnane, paediatric respiratory consultant at University Hospital Limerick, said that while people currently battling CF had an average life expectancy of just 35 years, this has risen to 55 years for children born today.

Early diagnosis and a range of new treatments were increasing the life expectancy dramatically, he explained.

"If you go back 50 years it was exceptional for a child with CF to live to 50, which was pretty devastating," he added.

Dr Linnane added that this was not taking into account a new 'wonder drug', which was significantly improving the lives of 10pc of CF sufferers and could increase their life expectancy.

Kalydeco has been available in Ireland for the past year.

And while it only works on 10pc of CF sufferers who carry a specific mutation, the results have been astounding, according to Dr Linnane.

"Their weight is improving by typically two kilos, their height is up and their lung function is up. Their general health and well-being also seems to have improved," he said.

Dr Linnane gave examples of two young patients with reduced lung function where use of the drug had had almost immediate positive effects.

"The normal lung function is 100pc. One lad had a reduced lung function of 25pc-30pc and about three months later it had improved to 40pc, which was really quite significant for him.

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"Another girl who had lung function of 96pc and I really thought it might not make much difference, her lung function rose to 115pc.

"If we are looking for the silver bullet, this is it. You couldn't design a better medicine if you tried. Unfortunately it only works on 10pc of patients but there are studies on new agents that are targeting other mutations."

Dr Linnane will address a CF conference in Galway this weekend along with GAA pundit Joe Brolly, who told how the new opt-out system for organ transplants could transform the lives of CF sufferers.

Mr Brolly also revealed how he still finds it difficult to accept that his own organ donation to friend Shane Finnegan had failed.

For more information on the national awareness week visit cfireland.ie.

Irish Independent

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