A new support group set up to raise awareness of people living with Pulmonary Fibrosis will hold its first meeting in the City Hotel on November 2.
The meeting follows an information event hosted by the Western Trust in partnership with the British Lung Foundation as part of IPF Week 2015 which runs from 5 October to 11 October 2015.
IPF is a progressive disease which results from scarring (fibrosis) of the lung tissue due to an unknown cause (idiopathic).
As a result, the lungs stiffen and breathing becomes restricted leading to breathlessness. About 5,000 people are diagnosed with IPF every year in the UK – a similar number to leukaemia. Men are more likely to have IPF and they account for six in ten new cases.
Dr Rose Sharkey, Western Trust, Respiratory Consultant explained: “As Idiopathic pulmonary fibrosis is an uncommon form of lung disease with limited treatment, patients can often feel isolated. Therefore, I am delighted that the BLF has again come forward to support respiratory patients in the Western Trust by setting up this new support group which I believe will be extremely helpful to and supportive of this group of patients and their carers.”
She added: “The North West IPF Support Group will allow people with IPF to meet up and discuss their experiences, with the help and support of doctors and nurses. It aims to provide help for everyone who has been affected by the illness, whether as a patient, a carer or a family member.”
Nessie Blair, Service Development Manager for British Lung Foundation in Northern Ireland, spoke about the impact the disease has on those who live with it. She advised: “IPF isn’t well known, but it has a huge impact in Northern Ireland. Around 100 people will be diagnosed with the condition in the province this year. There is currently no cure for this condition, and few treatments are available to slow it down. The BLF is committed to changing that by making IPF one of our top priorities. We’re funding research into the condition, raising awareness among doctors and nurses, and helping to support people who have been diagnosed. This collaborative partnership with the BLF and the Western Trust is a real breakthrough for IPF patient and carers support in Northern Ireland. BLF is also encouraged by the motivation and support of the IPF patients and carers who are leading the way in setting up the North West IPF Support Group.”
IPF patient Declan McGilloway said: “I was diagnosed with IPF in 2009 at the age of 45 and at that time there was limited information available on the condition. I had to retire from work due to my health deteriorating and this has put a great strain on my family both emotionally and financially.
“I now rely on oxygen to make my daily life easier and consider myself lucky as at present my condition has stabilised and as there is no cure for this awful disease my only hope is a transplant. Attending the pulmonary rehabilitation clinic at Altnagelvin Hospital has given me a life line. The respiratory nurse has taught me different techniques on how to cope with the disease and an exercise programme. Having been introduced to the BLF Breathe Easy Group it has made me feel more confident in dealing with my condition. I would encourage anyone who has IPF to come along to this first of its kind IPF Support Group in Northern Ireland.”
If you or a family member are interested in joining the group, or would just like to find out more please contact Helena Phelan, Western Trust Respiratory Nurse Specialist based at Altnagelvin Hospital on Tel: (028) 71611361 or email Helena.firstname.lastname@example.org