Most people have never heard of it, but a little-known lung condition is killing twice as many Scots as road accidents.
Incurable, idiopathic pulmonary fibrosis (IPF) claimed 2172 lives in Scotland between 2008 and 2012 – almost double that of road deaths in the same period.
It also claims more lives year-on-year than many well-known cancers including ovarian, skin cancer and leukaemia.
IPF causes continuous scarring of the lungs, making it increasingly difficult for a person to breathe. It has no known cause, no cure, and the average life expectancy after diagnosis is just three years.
But now, during IPF Awareness Week – from September 17 to September 25 – the British Lung Foundation (BLF) has announced it will grant £300,000 to IPF research in the next 12 to 18 months.
This approach is supported by Fiona Ballantyne, from Camelon, who was diagnosed with the condition in February.
A non-smoker, she admits to have being left numb by the realisation she had the disease.
Fiona (49), who works at the Department of Work and Pensions in Callendar Business Park, said: “I had never heard of IPF.
“I initially thought I was breathless because I was getting older or because I had put on weight – I didn’t think there was any other cause.
“I had pneumonia in September 2014 and I was taking a long time to recover.
“The breathlessness was not getting any better.
“So I went back to the doctor to get more tests.
“When I came back from Florida last summer, things were not normal and I knew there was a problem.
“I was initially given steroids but they made no difference at all.
“One day I was at a fundraiser for the Scouts and I started to cough and couldn’t stop.
“My lungs went into spasm. I thought it must be a chest infection and said to myself that I better go back to the doctors on Monday to get it checked out.
“But the next day, I was taking a short walk just across the street and I couldn’t breathe; I couldn’t catch my breath.
“It was horrendous.
“I went to the out of hours service at Larbert and they did tests – an ECHO, ECG, ultrasound – but nothing could explain why my oxygen levels had dropped so dramatically.”
In January, Fiona had a lung biopsy at the Golden Jubilee Hospital in Clydebank and, just a few weeks later, she was given the diagnosis.
“I was numb,” she recalled. “I went in there thinking that the worse case scenario was I’d have to take medicine for a condition and might put on more weight.
“But then they said there was no cure for it and that I could eventually need a lung transplant.”
IPF has a prognosis of between three to five years after diangosis, but Fiona is remaining positive and has learned how to manage her condition.
She now takes oxygen through her nose when she’s out walking.
Her symptoms are breathlessness without oxygen and in the mornings she has a cough. After exercise she has a dry cough but the rest of the time, and when she is just sitting at work, she is relatively stable.
To keep well, Fiona goes to the gym and she wants to keep fit.
She said: “You just have to pace yourself. If I do too much one day, I’m shattered the next.
“The condition does make your life more difficult.
“It takes me longer to do things...but it is what it is.”
Fiona, who has two sons, added: “My goal is that in 10 years’ time, I will still be able to get by with the oxygen.
“That would be fantastic.
“I do want to raise awareness of the condition because no-one has really heard of it.
“I feel I need to tell everyone that I haven’t smoked.
“I also find that the lack of oxygen really affects my memory, I’m always forgetting things. At night when I’m tired, I find it really hard to concentrate.
“I do want to let other people know about this.
“I want to tell people that if they have similar symptoms, don’t say it’s just your age or your weight, go and get it checked out.
“It could be something simple but, if not, the sooner it’s caught the better.”
If you are worried about breathlessness, join the 150,000 people who have taken the BLF’s online breath test www.blf.org.uk/breathtest.