A Chronic, Rare Lung Disease Causes More Than Just Irreversible Scarring of The Lungs

Pulmonary fibrosis is a rare lung disease that causes irreversible scarring of the lungs, which can cause shortness of breath and a persistent cough, and progressively gets worse over time. And because there is no cure, a diagnosis of pulmonary fibrosis can bring up a lot of emotions for both patients and caregivers.

American Lung Association Better Breathers Clubs are in-person adult support groups that provide respiratory health information and resources. Close to 500 nationwide have primarily served individuals living with chronic obstructive pulmonary disease (COPD) – a lung disease that also gets worse over time and has no cure.  We’ve now taken steps, with support from Three Lakes Partners, to better equip this program to serve those living with pulmonary fibrosis and their caregivers that face similar issues as those facing COPD and other chronic lung diseases.  

Better Breathers Clubs meet regularly and are led by trained facilitators that provide group discussions on topics ranging from oxygen therapy and breathing techniques to home healthcare and lung transplants, as well as how to live a full and engaging life with a chronic lung disease.

"The most important part of a Better Breathers Club is not always the educational component but the relationships that form within the groups," said Deb Brown, Chief Mission Officer of the American Lung Association. "Being able to open up these Clubs to pulmonary fibrosis patients and caregivers is an obvious extension of the goal of these groups – which is to help individuals better connect to others in similar situations."

Pulmonary fibrosis is a challenging and unpredictable disease, and symptoms can progress quickly or stay stable for many years, but most succumb to the disease three to five years after diagnosis. There are ways to make living with pulmonary fibrosis easier, including oxygen therapy, pulmonary rehabilitation and medications to help slow disease progression. Additional factors include nutrition, exercise, and stress management, all of which have an impact on quality of life for those living with pulmonary fibrosis.

In order to accommodate new members with pulmonary fibrosis, American Lung Association health educators have been working with Club facilitators to expand educational components to include information specific to pulmonary fibrosis, and learn how to emotionally support their new members.

"A diagnosis of pulmonary fibrosis can be devastating news to an individual and their family, and Better Breathers Clubs can offer practical and useful tools to handle the emotional changes they are going through," said Brown. "By expanding our support, we can offer hope to everyone affected by a chronic lung disease, including pulmonary fibrosis."

The American Lung Association's online support communities, "Living with Pulmonary Fibrosis" and "Caring for Pulmonary Fibrosis" are other sources of support for those touched by pulmonary fibrosis. As a free, online service available 24/7, community members share information about how they manage and live with pulmonary fibrosis, and support one another along the way.

For more information about pulmonary fibrosis and the full suite of American Lung Association resources for patients, caregivers and healthcare providers, visit Lung.org/pf. To find a nearby Better Breathers Club, visit Lung.org/better-breathers or call the Lung HelpLine at 1-800-LUNGUSA (1-800-586-4872).