A new campaign focussing on the stories of three people living with Idiopathic Pulmonary Fibrosis (IPF) shows their personal experiences of the progressively debilitating lung condition.
The videos, part of a global “Fight IPF” campaign supported by the Mater Hospital and the Irish Lung Fibrosis Association (ILFA), aim to give hope to those recently diagnosed with IPF and show that exercising while living with a serious lung condition is still possible.
IPF is chronic condition which causes scarring of the lungs. The cause is unknown and by the time symptoms appear, irreversible damage has occurred. Patients with IPF find breathing difficult and symptoms include severe breathlessness, a hacking cough and fatigue. Early diagnosis and treatment is crucial to delaying the progress of the condition.
About 1,000 Irish people live with the condition and despite the serious nature of the diagnosis, about half of all those diagnosed – and about 70 percent of patients with a milder form of the disease – are not treated with approved IPF therapy.
Those who fail to receive approved therapy at the early stages of the disease are those with more lung function to preserve.
One of the ways the progression and severity of the condition is measured by a patient’s ability to walk for six minutes. Sufferers say six minutes may not seem long, but when every breath is a struggle, six minutes can feel like a marathon.
The Fight IPF campaign videos aim to show that daily exercise is possible and is beneficial to the overall health of those living with the condition. In each video, people living with the disease share their tips for exercising while also offering words of encouragement and advice, urging others to “stand up to IPF” by learning more about their condition, continuing to fight for a better quality of life.
To help patients build their stamina, the Mater Hospital, in association with ILFA, developed a 2,000-steps-a-day challenge. The challenge aims to get patients moving and exercising safely with an attainable goal, taking into account their limitations.
Speaking about his condition and the impact exercise has had on his quality of life, patient Peter Gallagher, said: “It was a complete shock when I was diagnosed with IPF two years ago, but I’ve tried not to let it hold me back. I take part in the 2,000-steps program and make sure to get out for a six kilometre walk twice or three times a week.
“You have to find the walks that suit you. My wife and I walk in areas of flat land with benches dotted around in case I need a break. It’s all about perspective, six kilometres once a week may not sound like a lot, but to some that’s a marathon.”
Gráinne Murphy, senior respiratory physiotherapist, Mater Misericordiae Hospital, said exercise was “an important part of keeping ourselves fit and healthy even for those with breathing difficulties”.
“There are great benefits from doing regular controlled exercise. Learning how to control your breathlessness while exercising is an important part of any exercise plan to avoid becoming fearful and decreasing your activity. Exercise is beneficial for those with breathing problems particularly IPF patients and it will help improve your quality of everyday life.”
Nicola Cassidy, director of ILFA, thanked Swiss pharmaceutical company Roche's for establishing and backing the Fight IPF campaign. Information on ILFA, or the 2,000- steps a day challenge,is available on ilfa.ie