Rare Lung Disease is Like Trying to Breathe through a Tiny Straw
(September 4, 2018) -
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Pulmonary fibrosis, a rare lung disease that makes it difficult to breathe, affects hundreds of thousands of Americans and there are more than 50,000 new cases each year. That’s why, this September for Pulmonary Fibrosis Awareness Month, the American Lung Association in South Dakota released a series of resources to raise awareness and educate the public about this devastating lung disease.
“Pulmonary fibrosis is a chronic lung disease that is often fatal, with most succumbing to the disease three to five years after diagnosis. Many patients who suffer from this disease compare it to trying to breathe through a tiny straw, as patient Randy Cooke describes in our new video series,” said Jill Heins, the national director of lung health for the 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, so we urge the public to share this information with friends and family to help us raise awareness during Pulmonary Fibrosis Awareness Month.”
This September, the Lung Association released several resources to support patients with pulmonary fibrosis and their caregivers:
- Video Series: In a new series of videos produced by the Lung Association, 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. The videos can be found at Lung.org/pf or by visiting the American Lung Association’s YouTube page at YouTube.com/user/americanlung.
- Online Support Communities: The Lung Association is offering an expert series on online support communities for both patients and caregivers.
- September 10 – 14, join our “Living with Pulmonary Fibrosis” online support community and ask respiratory therapists from the Lung Association’s Lung HelpLine (1-800-LUNGUSA) your most pressing questions about diagnosing and living with pulmonary fibrosis.
- September 17 – 21, the series moves to our “Caring for Pulmonary Fibrosis” online support community, an opportunity for caregivers to ask specific questions.
- Better Breathers Clubs: 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.
“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 Heins. “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 resources near you. Through tailored pathways, you can find the support and information you need no matter where you are on your path with pulmonary fibrosis.
About the American Lung Association
The American Lung Association is the leading organization working to save lives by improving lung health and preventing lung disease, through research, education and advocacy. The work of the American Lung Association is focused on four strategic imperatives: to defeat lung cancer; to improve the air we breathe; to reduce the burden of lung disease on individuals and their families; and to eliminate tobacco use and tobacco-related diseases. For more information about the American Lung Association, a holder of the coveted 4-star rating from Charity Navigator and a Gold-Level GuideStar Member, or to support the work it does, call 1-800-LUNGUSA (1-800-586-4872) or visit: Lung.org.
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