WHEN Pat Walker was diagnosed with a rare lung condition, she was told there was no cure, that her brother had died from the same disease and that she had up to four years to live.
The 78-year-old said being told she had pulmonary fibrosis in 2010 was a "very-upsetting experience" – and it was during the first two years after her diagnosis she began having panic attacks.
"I didn't know anything about the condition at all," said Pat, of Mackworth.
"It was not called the same thing when my brother Gerald died in 2007 but, when they gave me my diagnosis, they said that was what he had.
"There's even the possibility my mum had this condition and died of it in the 1970s but we're not sure.
"The hardest and most nerve-wracking thing at the time was not knowing anything about it – and there wasn't really any support or help for people like me out there."
Today, retired office worker Pat, of Osterley Green, knows much more about pulmonary fibrosis – which causes severe breathing difficulties – and wants to lobby Parliament for further research to be done into the condition.
In the meantime, she has vowed to fight the condition for as long as possible and has helped set up a support group for people with the disease.
The Derby Pulmonary Fibrosis Support Group will meet for the first time at Mickleover Golf Club, in Uttoxeter Road, tomorrow from 2pm, where people can meet those behind the group and talk about what support they hope to receive.
It aims to provide "mutual support and information" about the condition, which causes scarring of the lungs and can lead to shortness of breath and a persistent cough.
The cause of pulmonary fibrosis is still unclear but it is estimated more than 5,000 cases are diagnosed every year in the UK.
Although there is no cure, treatment can relieve symptoms of the condition and slow its progression.
Health experts said people's reaction to treatment was very varied.
They said some respond well and remain relatively free of symptoms for many years, while others could quickly deteriorate and develop complications, such as heart failure.
Pat said: "Since my diagnosis, I've been looking into the life expectancies of people with this condition and I found a chap in America who survived for 14 years. So, I'm hoping to set a new world record and not give up until I reach 15!
"But it's that positivity we want to offer with the support group – it would have been a lifeline for me, particularly as I'm not incredibly computer-literate and didn't know the things out there you could find.
"It was actually during a seminar at Nottingham City Hospital last year that some of us were talking and the idea of the group came up. There are only about 10 across the whole country.
"Since we started talking about setting up a group, it's astonishing how many people have said things like, 'Oh, yes, my mother died of that condition,' or 'yes, my brother has that'.
"So we're just hoping to reach as many of these people as possible."
For more information about pulmonary fibrosis or the Derby group, call 07712 706703, e-mail info @derbypfsupport.org.uk or visit www.derbypfsupport.org.uk.
