Newsletter Editorial: Why? Our focus on Pulmonary Fibrosis Awareness
September is one of the most important months in the calendar for the pulmonary fibrosis community in Europe and around the world. It’s the time each year when we focus on raising awareness of pulmonary fibrosis and the impact it has on people living with the disease and their families.
The European Pulmonary Fibrosis Federation (EU-IPFF) was set up in 2016 by a group of patient organisations from different European countries, supported by leading doctors and nurses. A key aim of the new organisation was to raise awareness about this group of diseases, which is one of the greatest challenges facing our patients and their loved ones.
Living with pulmonary fibrosis is a challenge with patients and their families facing a range of problems, including late diagnosis and misdiagnosis, stigma, lack of adequate treatment and care, and lack of research. Every breath and every day is a battle for those living with pulmonary fibrosis. In view of this, EU-IPFF feels battling ignorance of the disease among the general public, policy makers and many clinicians is a battle, which patients, now and in the future, should not face alone.
September each year is when we build on our everyday mission of awareness raising to join with the global community for #PFMonth, with one week specifically designated as #IPFWeek (IPF is the most common form of PF). This year our annual campaign focuses on the slogan #BreathingLife acknowledging the seriousness of pulmonary fibrosis but celebrating the hopes and positivity of our patient community. During recent years our campaigns have targeted the public, primary care health staff and general practitioners and of course patients.
We use our annual campaigns to highlight the signs and symptoms of the disease, the need for early referral to specialist centres, the facts and figures, and above all stories from patients, carers, and healthcare professionals.
At EU-IPFF, we believe every month should be awareness month and try hard to get issues for pulmonary fibrosis patients the same level of support and public recognition that is rightly given to those of cancer patients. Sadly, although the life expectancy of pulmonary fibrosis patients is worse than many common cancers, we do not receive the same levels of care as cancer patients. The lack of awareness needs to change which is why we need to take awareness seriously. We need to speed up the process of diagnosis and get people onto appropriate treatments as soon as possible and to get policymakers and health care systems to recognise the impact this little-known disease has on us and the health care systems we rely upon.