NEW STATS REVEAL PEOPLE WITH PULMONARY FIBROSIS FEEL JUDGED FOR HAVING A PERSISTENT AND UNCONTROLLABLE COUGH

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September 2021

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  • Over half (57%) say their cough affects them every day with 50% worrying they can’t breathe.
  • Despite this, 70% say their biggest concern is the reaction and judgement of others, particularly in light of Covid with over half (53%) feeling embarrassed. A pulmonary fibrosis cough can’t be controlled and is not contagious.
  • APF is launching an awareness campaign to mark Pulmonary Fibrosis Awareness Month this September. One person dies every hour of pulmonary fibrosis and over 70,000 live with it. Despite this, very few people have heard of the disease.

Today (1 September 2021): To mark Pulmonary Fibrosis Awareness Month, Action for Pulmonary Fibrosis shares their most startling stats yet around the impact of living with an uncontrollable and persistent cough.  

Patients from across the UK, revealed the impact of living every day with a cough.  When describing their cough, 39% experience violent coughing bouts and over a quarter (28%) fear hurting their back or ribs when they cough.  

A pulmonary fibrosis cough affects every single aspect of people’s lives.  Over half (52%) say it stops them from having a conversation. Over a third (36%) say their cough prevents them from sleeping and a third (31%) say it stops them socialising with a quarter (28%) feeling depressed as a result of their cough.  

Liz Robertson, aged 65 from Maidenhead, has lung fibrosis and her cough stopped her from working, says:  

 My cough affects every part of my life.  I can’t ignore it or get away from it.  It’s the audible representation of my terminal condition and inextricably linked with breathlessness. The biggest change it made for me was that I couldn’t continue working. I hope that Pulmonary Fibrosis Awareness Month can help more people understand the impact of having a non-contagious and uncontrollable cough."

Comments from people living with pulmonary fibrosis include:

‘I have now broken 8 ribs as a result of violent coughing’
‘My cough makes me totally drained, stressed and panicky that I won’t be able to breathe’
‘I feel exhausted all the time, I’m embarrassed and angry when strangers stare or make stupid comments’
‘It dominates by life.  I cannot talk on the phone or zoom or even face to face. It sounds so dreadful.  When having a coughing fit I feel very lonely.’

Professor Surinder Birring, Consultant Respiratory Physician, King’s College Hospital London, says:

"I have run my interstitial lung disease and cough clinics for the past 15 years and have seen hundreds of pulmonary fibrosis patients with a debilitating cough.  Patients tell me it affects every part of their life but sadly there are no effective treatments and there is little research, funding or awareness of the impact it has.  I fully support Action for Pulmonary Fibrosis awareness campaign this September to lift the lid on the devastating impact of having a persistent and uncontrollable cough.”

Action for Pulmonary Fibrosis supports patients and their families affected by pulmonary fibrosis. The charity has developed a resource on how to manage a persistent and uncontrollable cough

Steve Jones, Chair of Action for Pulmonary Fibrosis, said:

These statistics and experiences are particularly distressing to see.  On top of this, patients are telling us they feel judged and misunderstood. We want people to pay attention to pulmonary fibrosis.  Greater understanding will reduce the fear and isolation that comes with a persistent and uncontrollable cough.

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Further information and interview requests:
Emma Pelling, emma@pellingpr.co.uk, 07958 558172
https://www.actionpf.org

Case studies, medical experts and APF spokespeople available for interview.

The survey was conducted online in August 2021 with 254 responses from patients and carers across the UK.

About Action for Pulmonary Fibrosis
Action for Pulmonary Fibrosis (APF) is the leading pulmonary fibrosis charity in the UK. We support patients and their families, through a network of over 75support groups. We raise awareness through campaigning, fundraising and education, and we fund innovative research to find a cure for the disease. Our aim is that everybody affected by pulmonary fibrosis should have abetter future.