Pulmonary fibrosis (PF) is a rare lung disease that causes irreversible scarring of the lungs and makes it hard to breathe. This chronic lung disease is often fatal, with most succumbing to the disease three to five years after diagnosis. In a new series of videos produced by the American Lung Association, Randy Cooke shares his tips on what he’s learned after being diagnosed with idiopathic pulmonary fibrosis (IPF) – the most common type of pulmonary fibrosis that affects 140,000 Americans and with an estimated 50,000 new cases each year. The videos can be found at Lung.org/pf or by visiting the American Lung Association’s YouTube page at YouTube.com/user/americanlung.
“During Pulmonary Fibrosis Awareness Month this September, the Lung Association asks the public to share these videos with friends and family to help us raise awareness,” said Amy Ellis, director of health promotions, American Lung Association. “Most cases of pulmonary fibrosis have no known cause and currently there is no cure. There is still much to be discovered on how to prevent and treat this serious lung disease and there is no better time to increase public awareness than during Pulmonary Fibrosis Awareness Month.”
This September, the American Lung Association recommits its efforts to combat pulmonary fibrosis and supporting patients and caregivers through its online support communities.
-Sept. 10 – 14, join our “Living with Pulmonary Fibrosis” online support community and ask respiratory therapists from the American Lung Association’s Lung HelpLine (1-800-LUNGUSA) your most pressing questions about diagnosing and living with pulmonary fibrosis.
-Sept. 17 – 21, the series moves to our “Caring for Pulmonary Fibrosis” online support community, an opportunity for caregivers to ask specific questions.
In addition, pulmonary fibrosis patients and caregivers can receive in-person support from medical providers and others living with the disease at Better Breathers Clubs. These Clubs offer access to local resources and advice on how to cope with pulmonary fibrosis while getting the support from others who are also living with chronic lung diseases. Local Better Breathers Clubs can be found at Lung.org/better-breathers. In addition, the Lung Association offers lung disease educational sessions at LUNG FORCE Expos across the country. To find a LUNG FORCE Expo near you, visit LUNGFORCE.org/expos.
“While you can’t cure pulmonary fibrosis, there are a number of things you can do to maintain a good quality of life and stay as healthy as possible and Better Breathers Clubs offer practical and useful information to help you stay active, reduce stress, protect your lungs and manage side effects,” said Alvin Rogers, RRT, an American Lung Association Better Breathers Club facilitator at Lakeview Regional Medical Center. “Working together, we can offer hope to everyone affected by chronic lung disease.”
Lung.org/pf is a new online resource for patients, caregivers, healthcare professionals, and advocates to learn more about pulmonary fibrosis, download resources and videos, learn about treatment information, sign-up for continuing medical education (CME) courses, and find nearby resources.