ABOVE: Bob Cooke from Union Hall is one of the campaign participants
A new campaign was launched last week to offer hope and practical support to people in Ireland living with the devastating chronic lung condition, IPF (Idiopathic Pulmonary Fibrosis).
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.
The campaign includes three individual journeys of hope as told by Irish people living with IPF, which will be shown during ICLAF and are available for the public to view on FightIPF.ie.
Bob Cooke from Union Hall is one of the campaign participants. Bob was diagnosed with IPF in June 2015, two years after he developed a dry cough that he couldn’t shake. Unfortunately in Bob’s case many of the early symptoms were missed. He had developed a constant feeling of a lump in his throat and saw a lung specialist who missed the disease and prescribed him an inhaler, which exacerbated his symptoms. He subsequently had heart tests done and an x-ray, which showed up scar tissue, which was confused by specialists as TB. Since his diagnosis he has been put forward as a lung transplant candidate, and has his first check test in The Mater Hospital this August.
In Bob’s own words…“It was a big shock and my initial thought was ‘this isn’t going to get any better’. At this stage my condition was very bad and to make matters worse, I had no information about it and it seemed that nobody had much to give me on it either so my wife had to do most of the research on the internet. I was put on oxygen and medication straight away and was told to avoid any physical activity.
When asked what advice he would give to others following his own experience in being diagnosed with IPF, he said” “Don’t ignore changes in your own body, if you have any sort of tickly cough be sure to get it looked at straight away and even suggest IPF to your GP because unfortunately not all medical professionals know what it is or how it presents, which is what happened in my case. Mine should have been picked up two years before it was, and that’s something I struggle with now because my condition wasn’t getting any better during that time. Initially I thought I was just unfit but now I can’t walk 100 yards without getting breathless and lifting so much as a pound of butter can be challenging”.
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 poor. Every year, around 360 people in Ireland are diagnosed with IPF (based on extrapolations from data for the UK) for which the cause is unknown and there is no cure. Despite this high number and the serious nature of the diagnosis, around 50 per cent of all diagnosed with IPF patients in EU (data from five EU countries) and around 70 per cent of patients with mild disease – those with more lung function to preserve – are not treated with approved IPF therapy.
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.