New campaign aims to give a voice to patients with serious lung condition

'Fight IPF’ campaign encourages Irish patients to stand up IPF

Offaly Express Reporter

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New campaign aims to give a voice to patients with serious lung condition

Noreen O’ Carroll (left) and Pamela Martin (right), who both live with idiopathic pulmonary fibrosis.

A new campaign was launched recently to offer hope and practical support to people in Ireland living with the devastating chronic lung condition, IPF.

Fight IPF, a global Roche campaign supported in Ireland by the Irish Lung Fibrosis Association (ILFA), the national patient organisation supporting patients with IPF, encourages all people living with IPF to stand up to the disease, get informed, and ensure that they receive the care they need for their individual IPF journey.

Fight IPF aims to initiate a country-wide conversation on what it means to be diagnosed with IPF and to give hope and real-world support to those living with the condition.

The campaign includes three individual journeys of hope as told by Irish people living with IPF, which are available for the public to view on FightIPF.ie. Those going through their own IPF journey can also avail of practical resources designed to inform and empower people contained within the online hub; this includes an IPF Consultation Guide to help people have an informed discussion with their health care practitioner.

IPF is a chronic, life-limiting and progressive disease that causes scarring of the lungs. Patients develop severe breathlessness, cough, low energy, and prognosis is very poor1. Every year, around 360 people in Ireland are diagnosed with IPF (based on extrapolations from data for the UK)² for which the cause is unknown and there is no cure.

Despite this high number and the serious nature of the diagnosis, around 50% of all diagnosed with IPF patients in EU (data from 5 EU countries) and around 70% of patients with mild disease – those with more lung function to preserve – are not treated with approved IPF therapy3.

Pamela Martin, who has IPF and features in the Fight IPF video series, said, “when the consultant initially told me it wasn’t good news, my first reaction was 'Please don’t say the big C', but I soon learnt it was IPF, and that there was no cure. I decided in that moment that “It won’t control me, because I will control it” and that has been my philosophy since. Like every diagnosis you have good and bad days, but you can’t let it get in on you. It’s crucial to educate yourself about your condition, and to speak to your doctor about your concerns and hopes for your care.”

Nicola Cassidy, Director of ILFA, said, “ILFA is delighted to be a part of the Fight IPF campaign which creates valuable awareness that truly highlights the importance of embracing life, and how maintaining a positive outlook and engaging in exercise can help patients manage this devastating lung condition. Most people have never heard of IPF and as such it can be very isolating for patients who have been diagnosed with the disease. It’s hugely important that people are aware that they deserve care⁴, there is hope, and there are practical resources available to them to help them through this journey.”

To view the campaign videos and access the online resource hub designed to support people living with IPF and their families, please visit www.FightIPF.ie

For more information about ILFA, please visit www.ilfa.ie