New figures reveal that twice as many people in the UK are living with the incurable lung condition idiopathic pulmonary fibrosis (IPF).
The British Lung Foundation said care for people with IPF needs to be prioritised as it emerged that there are 32,500 cases in the UK, rather than the 10,000 to 15,000 previously thought.
Scar tissue builds up in the lungs, making it increasing difficult for people with IPF to take in oxygen.
The average life expectancy after diagnosis is three years. People with the condition experience persistent coughing, wheezing and breathlessness.
The figures were revealed by the charity’s chief executive Dr Penny Woods (pictured) at a Royal Society of Medicine conference.
They are the result of a three-year study led by epidemiology professor David Strachan who is the director of the Population Health research Institute at St George’s Hospital, London which looked at cases from 2004 to 2012.
The charity’s research found IPF claims the lives of 5,300 people, rather than the 5,000 previously thought.
Prevalence was highest in Northern Ireland, north-west England, Scotland and Wales and lowest in London. However the reasons for the variation were unknown.
More people over 40 had the condition and 60% more men than women died from IPF between 2008 and 2012.
Woods said: “We don’t know whether these figures show that IPF rates are rising or whether this is just a more accurate picture than we’ve had previously.
“What we do know is that they show more clearly than ever before that tackling IPF needs to be made a priority in this country.”
She said IPF kills more people each year than conditions like leukaemia.
However, while more than £30 million is spent on leukaemia research each year, just £600,000 is spent on IPF research.
Dr Toby Maher said if IPF was a concern it would get more attention.
The consultant respiratory physician at London’s Royal Brompton Hospital called for specialist nurse to help patients manage their disease, better signposting for rapid access to early diagnosis and treatment.