September is Pulmonary Fibrosis Month
A Bedfordshire man is calling for greater awareness of a little-known, killer lung disease, which is now on the rise as a result of Covid-19.1,2
Peter Bryce, a patient from Luton, and chair of the Pulmonary Fibrosis Trust, says more needs to be done to raise awareness of pulmonary fibrosis (PF) – a disease that occurs when lung tissue becomes damaged and scarred:
“PF is a horrible, cruel and incurable lung condition which left me and my family devastated. Greater awareness and practical support are needed for patients, especially in the light of the current coronavirus pandemic.”
Pulmonary fibrosis is an irreversible, and sometimes progressive condition, which is often misdiagnosed. Symptoms can include severe shortness of breath, persistent dry cough, and ongoing fatigue – similar to other lung diseases such as asthma and chronic obstructive pulmonary disease (COPD).3,4,5,6
Causes of the disease may include smoking, dusts and viruses such as Covid-19. People with PF are extremely vulnerable and more prone to other lung infections. 3,4,5,6
Peter, like other PF patients, has been shielding in accordance with Government guidelines since March of this year.
Dr Natasha Ramsundar, consultant respiratory physician, Bedfordshire Hospitals NHS Foundation Trust, says: “Pulmonary fibrosis has a worse prognosis than many types of cancer and currently there is no cure for the disease. Research into lung damage caused by Covid-19 is at an extremely early stage. We need more research into this as well as improving diagnosis and treatments.”
About 70,000 people in the UK are affected by PF – with over 32,500 living with the more common and progressive form, idiopathic pulmonary fibrosis (IPF) – which has no known cause. 7,8
Over 5,000 people die each year from IPF and, without treatment, average survival is three years.6,8
Treatments for PF will depend on the cause of the fibrosis. For IPF treatment can include medication to slow the rate of scarring, known as antifibrotics. However, currently they can only be prescribed to people whose lung function falls within a set range. As a result, many people rely on medication to suppress their symptoms such as immunosuppressants and supportive care such as oxygen therapy and pulmonary rehabilitation. For very few, lung transplantation may be possible.5,6,10
The Pulmonary Fibrosis Trust is a UK charity, established to provide practical advice and support to those affected by the condition. Services include arranging portable oxygenators and mobility scooters, installing stairlifts and providing respite holidays for individuals, their families and carers.
The charity is run by a group of individuals who are living with, or have direct personal experience of, PF or IPF.
Patients requiring more information about PF and IPF should contact the Pulmonary Fibrosis Trust on 01543 442191 or visit www.pulmonaryfibrosistrust.org There is also a local Luton and Dunstable patient support group.
Note to editors:
Patients requiring more information about PF and IPF should contact the Pulmonary Fibrosis Trust on 01543 442191 or visit www.pulmonaryfibrosistrust.org They can also access information about the local Luton and Dunstable Pulmonary Fibrosis support group.
Please contact Lynsey Conway on 07778 304233
- Pulmonary Fibrosis and Covid-19: the potential role for antifibrotic therapy. Prof Jenkins G, George PM, Wells A. The Lancet. 15 May 2020. Accessed August 2020 at: https://www.thelancet.com/journals/lanres/article/PIIS2213-2600(20)30225-3/fulltext
- Long term respiratory complications of covid-19. Editorial. Fraser E. Accessed August 2020: https://doi.org/10.1136/bmj.m3001
- Translational Research in Pulmonary Fibrosis. Mathai SK, Schwarz DA. Translational Research 2019 Jul;209:1-13. Accessed August 2020 at: https://pubmed.ncbi.nlm.nih.gov/30768925/
- British Lung Foundation. Accessed August 2020 at: https://www.blf.org.uk/support-for-you/pulmonary-fibrosis/symptoms
- British Lung Foundation. Accessed August 2020 at: https://www.blf.org.uk/support-for-you/pulmonary-fibrosis/treatment
- NHS Overview of IPF. Accessed August 2020 at: https://www.nhs.uk/conditions/idiopathic-pulmonary-fibrosis/
- Action for Pulmonary Fibrosis website – no original data source
- Incidence, Prevalence, and Survival of Patients with Idiopathic Pulmonary Fibrosis in the UK. Strongman H, Kausar I, Maher TM. Accessed August 2020 at: Adv Ther 2018: May; 35(5):724-736
- National Institute of Health and Care Excellence (NICE) Idiopathic pulmonary fibrosis in adults: diagnosis and management (CG163). Accessed August 2020 at: https://www.nice.org.uk/guidance/cg163