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Spotlight on 'hidden' lung disease that kills more than the NI roads

By Ann W Schmidt

Published 17/09/2016

The British Lung Foundation found that idiopathic pulmonary fibrosis (IPF) affects more than 32,000 people in the UK, and some of the highest numbers are in Northern Ireland
The British Lung Foundation found that idiopathic pulmonary fibrosis (IPF) affects more than 32,000 people in the UK, and some of the highest numbers are in Northern Ireland

The wife of a man who died from an incurable lung condition is speaking out about the disease that took her husband's life after research shows that more people in Northern Ireland die from the condition than on our roads.

The British Lung Foundation found that idiopathic pulmonary fibrosis (IPF) affects more than 32,000 people in the UK, and some of the highest numbers are in Northern Ireland.

Tom McClelland, who passed away in February 2014 aged 64, had some problems with breathing, but his wife Kate (62) said he assumed it was due to his age.

After he developed a cough she convinced him to go to his GP, who recommended he use an inhaler.

When that didn't work, Mr McClelland went to a consultant in Co Antrim and got some tests done. By May 2013 he was diagnosed with IPF and told he only had a short time to live.

"We spent that summer and we did all the things he wanted to do," Kate said.

At the time there weren't many treatments besides oxygen therapy, but now there are some treatments and medications people can take.

However, there is no known cause for the disease and there is still no cure.

After Mr McClelland was diagnosed, he told few people about his illness and continued to work as long as he could.

His wife said it didn't matter how much time there was left, people can still do the things they've always wanted to do.

"You don't have to give up everything," she said. "In many ways, Tom taught me to live like that."

She added that those who had been diagnosed shouldn't give up.

"Don't start dying when you get the diagnosis, learn to live with it," she said.

Even though few people have heard of the disease, 679 people from here have died of IPF between 2008 and 2012.

In the same period, 384 people have died as a result of road accidents. The foundation also found that IPF takes more lives every year than many cancers, including ovarian, skin and blood cancer.

Nessie Blair, the service development manager for the foundation here, said that people sometimes don't realise how bad an IPF diagnosis is. They sometimes say they are thankful that they haven't been diagnosed with cancer.

"It's a worse diagnosis than cancer," she said.

The disease causes scarring of the lungs, which makes it difficult to breathe.

And after diagnosis, average life expectancy is three years.

Ms Blair said there had been a lack of research and funding for IPF in the province, even though Northern Ireland has some of the highest number of cases.

"We have, really, the worst presence possibly in the world," she said.

But, to help with that, the foundation has announced it will put £300,000 towards IPF research.

It has also partnered with the Western Trust to set up the only IFP support group in Northern Ireland. As a result an IPF patient support group was created in the trust area.

Ms Blair said the best thing people can do if they are experiencing trouble breathing is to take the foundation's online breath test to see if they should see a doctor.

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