Press Release: September is Lung Fibrosis Awareness Month

Lung Fibrosis Is a Battle

Every day, approximately three people in Ireland get diagnosed with lung fibrosis, a progressive and life limiting disease. Patients may have a dry cough for a while but may think nothing of it. Then perhaps after a few months of feeling breathlessness and fatigue along with the cough, they go to their doctor. Because idiopathic pulmonary fibrosis (IPF – the most common form of lung fibrosis) is a disease of exclusion, which means a diagnosis that is given after all others have been ruled out, diagnosis can sometimes take more than a year.

Once diagnosed, lung fibrosis patients in Ireland face a battle on two fronts – against the progression of their disease and against a healthcare ‘system’ that isn’t fit for purpose. Because the disease is complex, many are excluded from basic supports offered to patients with other diseases like pulmonary rehabilitation and access to specialty care close to home. As a result, patients are forced to travel sometimes great distances to receive the care they need.

Patients may also find that lung fibrosis is an expensive disease to manage as they are forced to bear the upfront burden of supplemental oxygen costs. At present, the HSE only reimburses after the expense is incurred, which can be more than 500 euros per month in some cases. There are also the increased electricity costs and travel costs that aren’t reimbursed. Many patients are unable to work and so the additional costs can be unmanageable for those on a limited budget.

We Fight Every Day

Originally founded in 2002, the Irish Lung Fibrosis Association (ILFA) has been fighting on behalf of patients for more than 20 years. ILFA is a patient-centred organisation. We regularly engage with the HSE, the medical community and other partners to educate and advocate on behalf of our members. Over the last several years, we’ve been working with the Government to increase access to services and in 2024 in particular, we’ve requested the Government provide grants and offsets for the high costs of managing the disease. We also provide supportive services directly to our members like patient information days, let’s talk sessions, exercise and other wellbeing classes.

Join the Fight

September is lung fibrosis awareness month. ILFA is working during the month in a variety of ways to raise disease awareness and to champion the cause of patients and the lung fibrosis community. Throughout September we will be featuring several member stories that demonstrate the strength and resilience of our community. Look for additional information on our website and social media pages.

If you or your loved one have been diagnosed with lung fibrosis, then you’re fighting too, but you don’t have to fight this battle alone. Join our community and we can provide help and support. For more information, contact us at info@ilfa.ie or 086 8715264.

Irish Lung Fibrosis Association

Registered charity number 20053437
Company registration number 367940
Charitable exemption number CHY 15462