A LITTLE-KNOWN, incurable lung condition is killing twice as many Scots every year as car accidents, a charity has revealed.
Rates of the illness, known as idiopathic pulmonary fibrosis (IPF), are higher in Scotland than anywhere in the world, according The British Lung Foundation (BLF).
The illness claims more than 400 lives a year, but the BLF says it receives so little attention that doctors still do not know what causes it. IPF causes continuous scarring of the lungs, making it increasingly difficult for a person to breathe. It has no known cause, no cure, and average life expectancy after diagnosis is three years.
In a fresh push to unravel the mystery behind the illness the BLF has announced it is putting £300,000 into research over the next 12 to 18 months, a quarter of its entire research budget.
George Chalmers, consultant respiratory physician at Glasgow Royal Infirmary, said he was delighted there were plans to boost research funding, adding it would give hope to people living with the difficult condition.
He said: “People living with IPF experience increasing breathlessness, loss of function and loss of independence, and can be prone to acute deteriorations.
“Although existing treatments can slow progression of the disease and may therefore prolong survival, they are not a cure, and may not be suitable for all patients.
“In Scotland, death rates due to IPF are among the highest in the world, and we need to ensure that people living with IPF in Scotland have access to review by specialist teams, access to treatments and access to support for themselves and their families in managing their symptoms.”
Fiona Bannantyne, who lives near Falkirk, has to rely on oxygen cylinders to walk anywhere after being diagnosed with IPF.
The 49-year-old said: “I feel like I’m being stared at all the time. I have oxygen on my back when I’m walking. I also feel I need to tell everyone that I haven’t smoked, because some people feel it is all my fault, it’s not.”
She was diagnosed in February after persistent breathlessness and coughing became so severe she struggled to cross the street.
“My son is 14 and will be 15 this year,” she said. “I don’t think he’s really absorbed what’s happened to me and doesn’t realise the seriousness.
“It has limited my life. For my 50th birthday next year I wanted to go to Florida, but I can’t now with the oxygen on planes to certain destinations not being allowed.”
Irene Johnstone, chief executive of the BLF, said: “Scotland has one of the highest rates of IPF mortality anywhere in the world. Sadly we have no idea why, what causes the condition or how to treat it effectively. That’s why we’re giving £300,000 to IPF research, to fight back against this devastating condition. I can only hope that people in Scotland lend their support this week, so that IPF can benefit from the huge rise in awareness and research donations that has led to real progress being made in other deadly diseases.
“We’re also urging people not to ignore unusual breathlessness - its main symptom. If you get out of breath doing everyday things, take our online breath test to see if you might need to see a doctor.
The charity is also encouraging people to seek advice if they are suddenly short of breath.
Ms Johnstone said: “We’re also urging people not to ignore unusual breathlessness, its main symptom. If you get out of breath doing everyday things, take our online test to see if you need to see a doctor.”
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