THE Pulmonary Fibrosis Trust calls for greater understanding of a devastating disease as thousands face loss of independence, isolation and fear of the future.
For most people, breathing is something they never think about. For people living with pulmonary fibrosis, every breath can become a conscious effort, and everyday life can change beyond recognition.
As Pulmonary Fibrosis Awareness Month begins this September, the Pulmonary Fibrosis Trust is highlighting the often-hidden reality of living with the progressive and incurable lung disease, where scarring of the lungs can make even the simplest daily activities exhausting.
Feedback gathered from people living with pulmonary fibrosis reveals the profound impact the disease can have beyond breathlessness itself. For many, getting dressed, preparing a meal, doing the shopping, cleaning the house or simply walking from one room to another can become a challenge. And for those who require oxygen, the treatment that helps them breathe can itself create new restrictions.
Patients describe having to plan their lives around oxygen equipment, carrying heavy cylinders, managing long lengths of tubing and worrying about whether they can travel or leave the house safely. One patient described oxygen as providing a lifeline while simultaneously making everyday life more complicated. “You lose pieces of the life you once took for granted.”
The impact is not just physical. People living with pulmonary fibrosis report anxiety, depression, fear about disease progression and grief for the lives they once had.
Many have had to give up hobbies, work, holidays and social activities, while others describe becoming increasingly isolated from friends and family.
The Pulmonary Fibrosis Trust says these experiences demonstrate why pulmonary fibrosis must be understood as far more than a respiratory condition. Peter Bryce, Chairman of the Pulmonary Fibrosis Trust and himself living with pulmonary fibrosis, said, “People see someone with an oxygen cylinder or someone who is breathless, but they don’t necessarily see everything that has been taken away from them. It can be the ability to walk to the shops, have a shower without help, play with your grandchildren, go on holiday or simply do something spontaneously without having to think about oxygen, fatigue and whether you will have enough breath.
“Pulmonary fibrosis doesn’t just scar the lungs. It can change every aspect of a person’s life.”
Around 70,000 people in the UK are estimated to be living with pulmonary fibrosis, with thousands more diagnosed each year. More than 6,000 people die from the disease annually. Yet pulmonary fibrosis remains poorly understood by the wider public.
900 miles to show what every breath means
This September, British-born endurance athlete Professor Nick Ashill will provide a dramatic contrast to the daily reality faced by people living with pulmonary fibrosis. On 5 September, Nick will set off from John O’Groats on an attempt to run over 900 miles to Land’s End, averaging around 40 miles a day for almost a month. Nick, 62, has travelled approximately 11,200 miles from his home and training base in New Zealand to Britain to undertake the challenge.
The run forms part of the Pulmonary Fibrosis Trust’s Every Breath is Precious campaign.
Nick’s endurance story is extraordinary. During a previous attempt to run across America, he was struck by a truck travelling at around 60mph and was left with catastrophic injuries. He underwent 16 operations and was told he might never run again. He returned to complete his run across America in 2022 and subsequently ran approximately 2,500 miles across Australia in 2024.
His British challenge will make him only the second person believed to have completed the extraordinary endurance ‘trifecta’ of running across America, Australia and Great Britain.
Nick’s message is not simply about running. He said:
“I will spend September pushing my body to run around 40 miles every day. But there are people with pulmonary fibrosis who struggle to walk across a room because they simply can’t get enough air into their lungs.
“That contrast is what this campaign is about. I want people to understand what breathing really means when it isn’t something you can take for granted.”
Nick’s run will take place throughout September, with supporters being encouraged to make their own move for pulmonary fibrosis, whether that means walking, running, cycling or simply challenging themselves to do something in recognition of people whose ability to breathe has been taken away.
A disease that changes lives
The Trust says that greater awareness is urgently needed, not only among the public but across healthcare services, so that people living with pulmonary fibrosis receive the information, support and understanding they need. Peter Bryce added, “For someone with pulmonary fibrosis, there is no escaping the disease. It is there when they wake up, when they walk, when they eat, when they sleep and when they try to live their normal life.
This September we want people to stop and think about that.
“For those of us who can breathe freely, every breath is something we barely notice. For someone living with pulmonary fibrosis, every breath really is precious.”
The Every Breath is Precious campaign aims to raise awareness and funds for the Pulmonary Fibrosis Trust’s support services, patient care and research.
To support the campaign or find out how you can make your move for pulmonary fibrosis, visit: https://bit.ly/
