Pulmonary fibrosis 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 – 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 Deborah P. Brown, American Lung Association chief mission officer. “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 support patients and caregivers through its online support communities.
From Monday Sept. 10 to Friday, Sept. 14, members of the Living with Pulmonary Fibrosis online support community can ask respiratory therapists from the American Lung Association’s Lung HelpLine (1-800-LUNGUSA) their most pressing questions about diagnosing and living with pulmonary fibrosis.
From Sept. 17 to 21, members of the Caring for Pulmonary Fibrosis online support community will give caregivers an opportunity 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 which offer access to local resources and advice on how to cope with pulmonary fibrosis while getting support from others living with chronic lung diseases. “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. Better Breathers Clubs offer practical and useful information to help you stay active, reduce stress, protect your lungs and manage side effects,” said Brown. “Working together, we can offer hope to everyone affected by chronic lung disease.”
A Better Breathers Club meets at 2 p.m. the third Wednesday of each month at the Lewes library. For information, contact Kathi Dayton at 302-645-3298.
To see 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 courses and find nearby resources, go to Lung.org/pf. Through tailored pathways, people can find the support and information needed no matter where they are on their path with pulmonary fibrosis.