ENNIS Hospital, as part of the UL Hospitals Group, and the Irish Lung Fibrosis Association (ILFA) have marked IPF World Week (September 16th to 24th) with an awareness event.
Idiopathic Pulmonary Fibrosis (IPF) is a rare and progressive condition which involves the development of scar tissue (fibrosis) in the lungs. There are over 1,000 people living with IPF in Ireland today and approximately 360 people are newly diagnosed with the condition each year.
Two new medications which help to slow down the progression of the disease (Pirfenidone licensed in 2013 and Nintedanib licensed in June 2017) are funded by the HSE. Some IPF patients may also be suitable for a lung transplant.
Noreen O’Carroll, a mother-of-two from Birdhill, County Tipperary, was in her mid-50s when she was diagnosed with IPF.
“It is devastating news to get. The prognosis for those diagnosed with IPF is two to five years but thankfully these two new drugs, which were not available until recently, are showing really good results. The other thing is how you deal with your diagnosis. You have to keep positive and keep educating yourself about the disease. That is what keeps you going,” said Noreen.
It was in this spirit that Noreen set up the ILFA MidWest Support Group, which she describes as a “fantastic source of support”.
“There are 10 of us currently and we meet every month. It’s a great source of support to be able to chat about things that work and things that don’t.”
Dr Aidan O’Brien, Consultant in Respiratory Medicine, UL Hospitals Group, said IPF affects approximately one in 1,000 people aged over 70 and that the disease was more prevalent among men than women.