American Lung Association’s Better Breathers Club Welcomes PF Patients and Caregivers

American Lung Association’s Better Breathers Club Welcomes PF Patients and Caregivers

The American Lung Association’s Better Breathers Club is now extending its resources and support network to patients with pulmonary fibrosis (PF), among others with chronic lung diseases.

Getting a PF diagnosis can be overwhelming, as the disease remains without a cure and is characterized by a progressive decline in lung health.

The Better Breathers Club provides respiratory health information and resources, and — with almost 500 clubs nationwide — support that has already helped patients with chronic obstructive pulmonary disease (COPD), another progressive lung disease that has no cure.

Now with support from Three Lakes Partners, an association devoted to finding a cure for PF, the Better Breathers Club is expanding to include PF patients and their caregivers.

Members of Better Breathers Clubs meet regularly and participate in group discussions, led by facilitators, on topics important to lung disease patients, such as oxygen therapy and breathing techniques, home healthcare, treatments, and lung transplant surgeries. Discussions can also include personal tips and advice that help those with chronic lung diseases live more fulfilling lives.

There’s also the comfortable of being part of group with shared challenges and obstacles.

“The most important part of a Better Breathers Club is not always the educational component but the relationships that form within the groups,” Deb Brown, chief mission officer for the American Lung Association, said in a press release.

“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,” Brown added.

To prepare to welcome new members with PF, health educators with the Lung Association are working closely with Club facilitators to extend both educational and emotional support programs to include PF.

“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,” Brown said. “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 communities, “Living with Pulmonary Fibrosis” and “Caring for Pulmonary Fibrosis,” also aim to assist PF patients and caregivers.

Joining the communities is free and they are accessible 24 hours each day, as a space for members to share ways of coping and managing with this disease.

2 comments

  1. Laura says:

    I always thought the BB club and the ALA was for all lung diseases until I was diagnosed with IPF. Here in my area most BB clubs are associated with hospitals and most of them concentrate on COPD and don’t know very much about IPF or any Interstitial Lung Disease. Additionally the ALA seems to be concentrating only on Lung Cancer. It is discouraging. I have been to a few events including ALA walks and only see a small pamphlet on IPF and no one pushing its awareness. I have asked and was met with enthusiasm on ‘here is our new pamphlet and info on our website’. I’ve even offered to be involved and sit at a table.
    I know it’s new for ALA to think of something other than the ‘general’ umbrella that they are used to so I hope going forward this changes and more emphasis is placed on Interstitial Lung Diseases. The difference between Cancer, COPD and ILD is the number of drugs there are to treat. Cancer and COPD have many and isn’t necessarily an immediate death sentence like IPF is
    Thank you

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