New survey reveals staggering lack of awareness of killer lung scarring disease that's on the rise

Text on image says: Around 1 in 3 people living in the UK have never heard of PF
September 2023

New statistics released today (4 September 2023) from the charity Action for Pulmonary Fibrosis (APF), reveal over three quarters of people with pulmonary fibrosis (77%) say their GP didn’t tell them they might have pulmonary fibrosis before referring them to hospital, leaving patients unaware they’re living with a fatal lung disease.

  • In addition, nearly a third (30%) of people in the UK have never heard of pulmonary fibrosis yet the average life expectancy for someone living with the disease is 3-7 years. This is worse than many common cancers such as breast and prostate cancer.
  • Delays in diagnosis stops people getting the vital support and treatments they need and leaves them feeling isolated and in fear. Pulmonary fibrosis is on the rise here and there’s currently no cure.
  • Action for Pulmonary Fibrosis has developed a hard-hitting AI led campaign with the sound of pulmonary fibrosiswww.hearmylungs.comto raise more awareness about this deadly disease.  

The largest post-COVID survey of people living with pulmonary fibrosis released today (4 September 2023) for Pulmonary Fibrosis Awareness Month reveals the shocking lack of awareness of a terminal lung scarring disease which is on the rise.  

Tens of thousands of people in the UK are living with pulmonary fibrosis – a deadly lung disease that progressively scars your lungs until you can’t breathe. Common symptoms of pulmonary fibrosis are a persistent cough and breathlessness but many people aren’t diagnosed until late and miss out on the support and treatments they need.  

Amy price, who lived with pulmonary fibrosis before her recent lung transplant said:

I know what it’s like to live with pulmonary fibrosis – it’s a horrible disease that robs you of your breath and life. We need to grab people’s attention so more people know what pulmonary fibrosis is. Our GPs and nurses at the surgeries require more training so they can recognise the symptoms of pulmonary fibrosis and not confuse it with asthma and other lung diseases. That’s why I’m supporting Action for Pulmonary Fibrosis’s campaign.

People affected by pulmonary fibrosis say they feel like they’re living with an ‘invisible killer’. You can hear the ‘velcro’ rasping breath of someone with deeply scarred lungs. For Pulmonary Fibrosis Awareness Month this September APF have launched an innovative and hard-hitting campaign. Developed by 11 London, the campaign invites people to scan a QR code and listen to the sound of Geoff who is living with deeply scarred lungs and currently waiting for a lung transplant. Listen here –

Louise Wright, CEO of Action for Pulmonary Fibrosis, says:

These new survey findings are shocking and sadly echo what we hear day to day from people living with pulmonary fibrosis. Pulmonary fibrosis is a devastating diagnosis yet people are left feeling isolated and in fear.  This year for Pulmonary Fibrosis Awareness Month we’re launching our hardest-hitting campaign yet – we want more people to know about this deadly lung disease that’s on the rise and that Action for Pulmonary Fibrosis is here to offer vital support for anyone affected.