Living with Sarcoidosis Just Got a Little Easier
"My Better Breathers Club is the one place where I can just be Debbie—not 'Debbie with sarcoidosis,'" said Debbie Davis, a member of the Chicago Better Breathers Club. "No one is surprised by my symptoms, and while we have help with our portable oxygen—nobody is looking at you funny or worried about you. It's refreshing to just relax and have people around you that understand what you are going through—because they are going through it too."
Designed for individuals living with a chronic lung disease, the American Lung Association's Better Breathers Clubs are in-person support groups led by a trained facilitator. The meetings feature technical presentations about pulmonary rehab and oxygen therapy as well as more relaxed discussions around the best ways to live day-to-day with a chronic lung disease. "But mainly we just sit around and laugh. In fact, we come 30 minutes early just to gossip!" said Debbie.
During April's Sarcoidosis Awareness Month, we are partnering with the Foundation for Sarcoidosis Research to invite individuals with pulmonary sarcoidosis to join our Better Breathers Clubs. Sarcoidosis is an inflammatory disease that can affect any organ, but 90 percent of cases involve the lungs and lymph nodes.
Learn more about sarcoidosis
Watch our “Sarcoidosis: What You Need to Know” webcast with Lisa Maier, M.D., MSPH, FCCP, Chief, Division of Environmental and Occupational Health Sciences at National Jewish Health and Tia Gray, a sarcoidosis patient and advocate, developed in partnership with Foundation for Sarcoidosis Research. Patients and caregivers are also able to ask Dr. Maier questions during our “Ask the Expert” series from April 14 – 19 on our “Living with Lung Disease” online support community.
It's also a confusing disease with symptoms that come and go on their own, and can include cough, shortness of breath, chest pain, fatigue, and even skin rashes and eye irritation. While many patients improve on their own or with treatment, others need ongoing care from experienced healthcare providers. As such, we encourage patients to take an active role in their care plan and to seek opportunities for education and support. One such resource for emotional support in which patients can learn from and lean on others who are also impacted by this difficult disease is our Better Breathers Clubs.
"While our group feels like a little family, I'm also learning more about this crazy disease that I've been living with for over 10 years," says Debbie. "I'm able to ask one-on-one questions with doctors and respiratory therapists, and when we talk about COPD or severe asthma—just because it doesn't affect me personally, doesn't mean I can't learn something from that."
There are over 500 Better Breathers Clubs around the United States, and individuals living with chronic lung disease and their caregivers and loved ones are all invited to attend. "We're all dealing with something that can sometimes feel overwhelming, and to know that you're not going through this alone means the world," said Debbie.
Visit Lung.org/better-breathers to find a club near you.
Support for this partnership was provided by an unrestricted educational grant from Mallinckrodt Pharmaceuticals.
Blog last updated: February 26, 2020