This year's IPF World Week (September 21-29) sees healthcare professionals, patient advocacy groups, people living with idiopathic pulmonary fibrosis (IPF), who have an estimated median survival time of two to five years, and their families calling for an integrated approach to further strengthen the national and international network of people working to support patients with this fatal orphan lung disease. The fundamental aim is to lessen patients' isolation and fear by demonstrating that there is a growing community of support.
This year's campaign theme of the awareness week, which was founded only two years ago in order to address the issue that people with the disease felt overlooked, is 'Breath of Hope'. In Europe, around one hundred initiatives will take place in IPF centers of excellence, which will involve IPF experts, patients and wider communities. In the United States many initiatives are taking place during IPF World Week, some of which have extended throughout the month of September, driven by two leading patient associations, the Coalition for Pulmonary Fibrosis (CPF) and the Pulmonary Fibrosis Foundation (PFF).
"IPF is a serious and rare illness and by being a rare and poorly understood disease, patients often feel secluded and alone. There is a European network of IPF patient advocacy groups working to support patients and their families. We must bring hope to those who live with IPF and show that their needs are now being better recognized. This year, images representing the 'Breath of Hope' campaign were selected by European, American and Canadian IPF associations through an international public photo and video competition. The two winning images represent support across generations, using soap bubbles as the symbol chosen to promote IPF awareness," said Rosalba Mele, President of Ama Fuoridalbuio, one of the most active patient associations in Europe.
She added, "In today's social media age we can help patients embrace digital advances and the power of online communities, such as RareConnect or IPFWorld, allowing individuals to connect and share experiences; networking to a degree that previously might not have been possible."
IPF is a progressive, irreversible and ultimately fatal orphan lung disease which causes scarring of the lungs, irreversibly destroying normal lung architecture and hindering a patient's ability to breathe. It is often characterized in adults above 45 years old by non-productive cough, breathlessness and the sound of crackles when listening to the chest, sounding like Velcro being slowly torn apart.
Approximately 30,000-35,000 new patients will be diagnosed with IPF in the 27 EU countries each year. The disease typically occurs in adults and is more common in men than women.
"It's the role of physicians, patient advocacy groups and medical companies to raise awareness of conditions in order to help and provide the tools for individuals with the disease, and their families, to help them cope better. It's also important for physicians to look for and recognize the signs of IPF much earlier than is current practice, given that the lung damage associated with IPF is irreversible," said Professor Jim Egan, Director of the National Advanced Lung Disease Program and Director of the National Organ Donation and Transplantation Office, Ireland.