A mum-of-eight who has been struck down with a deadly lung disease has launched her own bid to boost awareness of the illness.

Kathy Augustine hosted a stall at Huddersfield Outdoor Market to raise cash for pulmonary fibrosis.

Kathy, who was diagnosed by her GP two years ago, said hardly anybody knew about the terminal disease.

“It was incredible the amount of people who came up to me and said ‘what is it?’,” she said.“I must admit I’d never heard of it until I got it.

“But because a lot of people don’t know about it, they’re never going to get diagnosed. It’s frightening because so many people haven’t heard of it.

“It is a death sentence.

“It’s a terminal disease that there’s no cure for.”

The Newsome mum found out she had it by chance after going to see her GP. The disease was later confirmed by an MRI scan.

“It was quite a shock when she told me what it was,” she said.

“I’m lucky I’ve got a really good GP who spotted it.

“She diagnosed me before I even had any x-ray or MRI scans.

“But lots of people won’t have that so they need to be aware of the symptoms.”

The prognosis for most sufferers of the killer lung disease is three to five years.

The lungs stop working due to scarring of the tissue, requiring a full transplant to survive.

Symptoms include shortness of breath and a persistent dry cough.

Kathy, who is not yet on the lung transplant waiting list, raised £200 for charity selling clothes and bric-a-brac.

She added: “So many people I know have died this year because there aren’t enough transplants.”

To find out more visit www.nhs.uk/conditions/pulmonary-fibrosis/

The family view

It was a rare and barely understood killer disease that caused the death of brave Huddersfield man, Richard Sainsbury.

The 69-year-old lost his battle with idiopathic pulmonary fibrosis in 2013, only several months after he was diagnosed with the devastating condition, which causes irreversible scarring of the lungs for no known reason and is currently incurable.

It was a terrible shock for Richard and his wife Carol, who had thought that he was suffering with a more common respiratory disease.

Now Carol, 65, has launched a heartfelt fundraising bid to help people recognise the warning signs of the condition, which this month is the subject of a national awareness campaign.

Carol Sainsbury and her husband, Richard, when he was suffering with pulmonary fibrosis in 2012
Carol Sainsbury and her husband, Richard, when he was suffering with pulmonary fibrosis in 2012
 

Carol, of New Grove Drive, Dalton resident was with Richard when he received the news at Huddersfield Royal Infirmary in 2012, and said: “Understanding the diagnosis was such a shock to the system.

“At first we felt relieved that it wasn’t cancer but we soon found out that it’s no better than it- it’s a death sentence.

“He’d had asthma and had already been diagnosed with Chronic obstructive pulmonary disease (COPD) in 2010.

“The disease was quite advanced when they found it but the worst thing was that they couldn’t give us a detailed prognosis because there just isn’t enough known about it.

“Other advanced sufferers can live up to around five years with it but Richard died within one year and his last six months were spent in a wheelchair.

“It’s a really horrible and vile disease that essentially leaves people fighting for breath.”

Richard was one of 5,000 people in the UK who are diagnosed every year. Nurses told the pair to try keep life as normal as possible but the amount of unknowns made it hard for Carol to bear.

“Of course we tried to keep going like we had been doing before but after he was diagnosed I filled my head with things so I knew what to expect.

“Not even many doctors know about it or what a diagnosis means but I found out that it usually develops in those over 50-years-old, with men much more likely to get it.

“Around 50 per cent die within three years and the only treatments available to slow it down medicine for those with in between 50 and 80 per cent functioning lung capacity or a lung transplant.

“But only 25 per cent of sufferers are suitable for it and by the time a match is found many are too weak to have the operation.

“Richard was so brave throughout.

Carol has already completed her first awareness raising mission by getting her first tattoo, which raised £237 for the Kirkwood Hospice which supported Richard.

She plans to embark upon even more ambitious challenges, which could see getting a bigger second design.

Some of the symptoms of IPF include breathlessness, a cough that will not go away and tiredness.

“It’s more common that Leukaemia and kills as many people as breast cancer so it’s really important that we highlight it to as many people as possible.

“The sooner you get a diagnosis the more chance there is of controlling it, which could help them to live longer.

“Several famous people had the same condition, including Marlon Brando and Evil Knievel.

“Richard was my best friend and had a very dry sense of humour- I miss him terribly and don’t want other people to go through the same that he did.”

For more information about the disease, go to: http://www.actionpulmonaryfibrosis.org

Factfile

According to Action Pulmonary Fibrosis, Idiopathic Pulmonary fibrosis is a term that describes the formation of scar tissue within the lungs.

It usually occurs around the small air sacs or alveoli of the lungs, which are important for the transfer of oxygen and carbon dioxide from the lungs into the bloodstream.

Over time the condition makes it harder for oxygen to pass from the lungs to the body where it is needed.

First this leads to breathlessness and can even affect simple daily tasks such as washing and dressing, eating and talking.

Widening of the tips of fingers and toes, tiredness and a persistent dry cough are other symptoms that will not go away.

Several tests are carried out to diagnose the condition, which has no known cause and is currently affecting 15,000 people in the UK.

The drug Pirfenidone is the only licensed treatment in the UK, whilst N-acetylcysteine and acid reflux therapy can help people with less-advanced forms of the disease, whilst oxygen therapy can help others.

Lung transplants are also considered for patients who are considered suitable and able to withstand the major operation.