Maureen O’Donnell
Chief Executive Officer, ILFA
Lung fibrosis, also called pulmonary fibrosis or interstitial lung disease (ILD), is a progressive, life-limiting disease causing lung tissue thickening and scarring, resulting in decreased lung function over time.
The disease usually develops in adults aged over 60 years and causes breathlessness, fatigue and chronic cough, severely affecting the patient’s quality of life. While lung fibrosis can result from various causes, idiopathic pulmonary fibrosis (IPF), a subtype with no known cause, is the most common form and can be difficult to diagnose and treat.
Lung fibrosis prevalence and progression
In recent years, it’s believed that lung fibrosis prevalence is rising in Ireland, potentially linked to Covid-19 but also possibly due to improved diagnostic methods and an ageing population. Data from the Irish Thoracic Society indicates that up to 5,000 people in Ireland may have lung fibrosis, but the real figure could be higher. It’s impossible to know the exact number as there is no disease registry. The disease progresses rapidly if left untreated. The average lifespan following diagnosis can be just three to five years, but this varies widely from patient to patient.
Lung fibrosis treatment options
Treatment options for lung fibrosis focus mainly on managing symptoms and slowing disease progression. There are two antifibrotic medications available in Ireland, Pirfenidone and Nintedanib, which can slow disease progression for some people, but they do not cure lung fibrosis. For some people, a lung transplant might be an option.
The average lifespan following diagnosis
can be just three to five years, but this
varies widely from patient to patient.
Research and education initiatives
Research into lung fibrosis is ongoing in Ireland. There are a number of Irish universities and institutions taking part in global research efforts, investigating genetic and environmental factors contributing to the disease and developing new therapies. Research aims to improve early diagnosis and create more effective treatments, offering hope for individuals affected by lung fibrosis.
The Irish Lung Fibrosis Association (ILFA), a national organisation founded in 2002, has offered resources, information and direct support to patients and caregivers for over 20 years. ILFA also advocates on behalf of the lung fibrosis community for more equitable access to healthcare services and promotes research into causes and treatments. Additionally, ILFA helps educate the medical community and raises awareness of the disease.
See www.ilfa.ie for more information.