A new support group to raise awareness of a little-known debilitating and deadly lung disease has been launched in Fife and Tayside.
Idiopathic Pulmonary Fibrosis (IPF) which gradually destroys the lungs and leads to respiratory failure.
IPF kills around 5,000 people a year in the UK, more than leukaemia, and the average life expectancy from diagnosis to death is between three and five years.
The UK charity Action for Pulmonary Fibrosis hopes to raise more awareness locally and offer practical and emotional support for sufferers and their families.
Robert Gault, 67, from Pittenweem, was in his late 50s when he started to notice that he was feeling out of breath more than usual.
“The doctor told me he thought I had IPF but I’d never heard of it before,” he said.
“He printed me out an article and sent me on my way. When I got back into my car, I read the printout.
“It was only on the last page, the last paragraph that I read the prognosis: three to five years life expectancy. This completely knocked me for six.
“I rang my wife and told her…she was in complete shock. When you get news like that, lots of things start running through your mind.
“It might sound trivial but, I really enjoy buying new shirts. I thought to myself, will I buy another shirt? Is there any point? After that I really went into a state of depression.
“I didn’t know what to do. Everything seemed to collapse round about me for a while. Nobody I knew had heard of IPF. People just assume it’s from smoking, but it’s not, we don’t know what causes it.”
Mr Gault now depends on supplementary oxygen at home, which he uses throughout the night and whenever he is doing anything strenuous.
Despite his condition, he is determined to remain as active and as positive as possible.
“I’ve been keeping fairly well over the past few months – I even went to Portugal for a couple of weeks,” he said.
“At home, I get a gardener in now as we’ve about 20 steps up to our garden. But I still walk my dogs, oxygen on my back, for as a far as I reasonably can every day which keeps my lungs working.
“Exercise is very important for people with IPF, that’s why I found pulmonary rehabilitation classes so helpful.
“My consultant, all the local and hospital medical staff, physio, pulmonary and local pharmacists have been great.
“So have my fellow “IPFers” who go to the same support group as I do in Ninewells or chat with on the IPF Facebook page.
“I still have so much to learn about IPF, and I know the prognosis isn’t good – with the latest medication I’ve managed to reach the five year mark, I’m doing my best to keep my head up and carry on.”
