Steve Jones
Chair of Trustees, Action for Pulmonary Fibrosis
Imagine that every breath you take is an effort. This is what it’s like for around 70,000 people in the UK living with the devastating lung disease, pulmonary fibrosis.
Pulmonary fibrosis is a little-known condition that causes scarring or stiffening of the lungs, making it hard for oxygen to pass from the lungs to the body.
Over time, people living with pulmonary fibrosis find it increasingly difficult to breathe – even becoming breathless when eating or talking.
As we live through the COVID-19 pandemic, people with pulmonary fibrosis perhaps understand better than most what COVID-19 might feel like.
Early symptoms include a persistent cough and breathlessness. Everyday tasks and activities many take for granted become increasingly hard.
In time, patients become more and more dependent on oxygen, ultimately dying from respiratory failure. One person dies every hour of pulmonary fibrosis.
There is hope for patients with pulmonary fibrosis
Today, we are acutely aware of our lungs. We are determined to raise awareness of pulmonary fibrosis and, more importantly, what can be done to help.
Action for Pulmonary Fibrosis is giving hope to patients. We are spearheading ground-breaking research programmes and have a network of 80 support groups across the UK providing practical support.
We are upscaling our online support alongside our telephone support line staffed by a specialist nurse.
We are working hard to reduce the isolation and anxiety and signpost to local services. We have also made a series of videos on topics like nutrition and exercise for people isolating.
While we understand the causes of some types of pulmonary fibrosis, others we do not.
One of the most aggressive is idiopathic pulmonary fibrosis (IPF), which affects around 32,500 people. There are limited treatments, no cure and it has no known cause.
Life expectancy can be between three to five years following diagnosis and it has a worse prognosis that most cancers. Despite this, awareness is low, and it can take over six months to receive the correct diagnosis.
Pulmonary fibrosis normally affects people over 50 and more men than women. The diagnosis cruelly strikes as they are looking forward to a new phase in their lives – making plans for their retirement or travelling overseas.
As we face the ‘new normal’, support for charities like Action for Pulmonary Fibrosis is crucial and will be needed more than ever.
About Action for Pulmonary Fibrosis:
Action for Pulmonary Fibrosis (APF) is a growing community of patients, families, researchers, and healthcare professionals striving to find a cure for pulmonary fibrosis so that everyone affected by the disease has a better future. We provide personalised support to patients and families and raise awareness of pulmonary fibrosis through campaigning, fundraising and education. We are also committed to funding research to improve quality of life for people living with pulmonary fibrosis today and tomorrow.
