Pulmonary fibrosis is a rare lung disease that causes irreversible scarring of the lungs, making it nearly impossible for oxygen to pass through the walls of the air sacs into the bloodstream. This lung disease has no cure and is often fatal, with most succumbing to the disease three to five years after diagnosis. About 140,000 cases of the disease have no known cause, and are referred to as idiopathic pulmonary fibrosis or IPF.
"Have you ever tried to breathe through a coffee stirrer?" asked Randy Cooke, who was diagnosed with IPF in 2008. "That's exactly what pulmonary fibrosis is like. No matter how hard you try, you can't get enough air."
Today, the American Lung Association unveils a new online platform with resources and support for individuals affected by this devastating disease. Through tailored online pathways, patients, caregivers and healthcare professionals can find curated information and support for every stage of pulmonary fibrosis. These new digital assets include up-to-date information about treatment options; videos and resources on ways to improve day-to-day quality of life; online support communities and information about in-person support groups; educational materials for patients; and continuing medical education (CME) courses for healthcare providers.
"Pulmonary fibrosis is a challenging and unpredictable disease, and there is not enough attention or resources dedicated to it," said American Lung Association National President and CEO Harold P. Wimmer. "With support from Three Lakes Partners, a venture philanthropy committed to ending this heartbreaking disease, we are able to provide a hub of information and a supportive community for pulmonary fibrosis patients, caregivers and their healthcare teams."
Pulmonary fibrosis is unique to each individual and can progress quickly or stay stable for many years. For those diagnosed with pulmonary fibrosis, there are ways to make living with this disease easier, including oxygen therapy, pulmonary rehabilitation and medications to help slow the disease progression. Additional factors include nutrition, exercise, and stress management, all of which have an impact on how people are living with pulmonary fibrosis. And for some patients, pulmonary lung transplantation is an option. Randy was one of the few patients lucky enough to receive a double lung transplant, though this is not available for all patients.
"After three years of living with IPF, and fighting for breath every day, I got the phone call that they had a donor," Cooke said. "I'm so lucky, it's unbelievable."
In addition to the new resources available at Lung.org/pf, the American Lung Association has online chat and telephonic support from respiratory therapists and registered nurses through the toll-free Lung HelpLine (1-800-LUNGUSA) for personalized support.
For media interested in learning more about pulmonary fibrosis and IPF, the new online platform, or to talk to a medical practitioner or Randy Cooke, contact Allison MacMunn at the American Lung Association at [email protected] or 312-801-7628.
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 education, advocacy and research. The work of the American Lung Association is focused on four strategic imperatives: to defeat lung cancer; to champion clean air for all; to improve the quality of life for those with lung disease and their families; and to create a tobacco-free future. 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.