Better Breathers Clubs are always evolving to meet the needs of their members. A few Long Island Clubs started (virtually) welcoming people from all around the country who were living with Long COVID in the earliest days of the COVID-19 pandemic. Long COVID, also known as long-haul COVID and chronic COVID, is a condition that causes ongoing, returning or new symptoms after having the SARS-CoV-2 infection that causes COVID-19. In 2022, 6.9% of adults had Long COVID according to the CDC.
Lisa Penziner, RN, and her team of facilitators, run several Better Breathers Clubs in the New York area, providing support for those living with chronic lung disease as well as their caregivers and loved ones. She spoke with us about her experience working with patients living with Long-COVID.
What made you start recommending Better Breathers Club meetings to people that were living with Long COVID symptoms?
It really was a natural progression for people living with post-COVID symptoms to join the Better Breathers Clubs. Often, people who are living with Long COVID have symptoms similar to other chronic lung diseases, such as shortness of breath, fatigue and difficulty managing their daily activities. When they join a Better Breathers Club, they will get the support and education that all people living with chronic lung diseases can benefit from.
What unique challenges do people living with Long COVID face?
People living with Long COVID can have a wide array of health problems ranging from general symptoms such as fatigue to more specific symptoms such as shortness of breath, cough, headache and brain fog. For many of these people, they were healthy prior to getting this, so having a chronic condition is very new to them. They are learning to navigate how to manage a chronic disease that may be impacting them in a variety of ways.
What does a Better Breathers Club offer to people living with chronic lung disease?
The Clubs provide education on learning how to deal with the symptoms that impact their daily lives. We also work on breathing techniques, relaxation techniques and getting moving at whatever level you are able to. Clubs are a place where people can connect, socialize and interact with each other. People living in similar situations can give back by sharing what they have learned from their experiences. For other people, it is just helpful to listen.
Better Breathers Clubs offer free, patient-centered and community-based educational opportunities and support to persons with chronic lung disease and their families, friends and support persons with a goal of improving the quality of life and functional status for members. Clubs meet both in-person and virtually.
Who can join a Better Breathers Club?
In the early days of COVID, we frequently had members who were between 30-50 years old joining the Clubs. We continue to have a wide age range of people, living with a variety of chronic lung diseases, from Long COVID to COPD or pulmonary hypertension and everything in between. But it becomes less disease specific for the group members and more about how they are going to deal with the symptoms of their disease. It is about people experiencing lung damage and how they are going to live their best life.
What would you say to prospective Better Breathers Club members?
The Clubs provide a community for the members. They do not have to feel like they are alone because there are other people out there that are living in similar situations. Better Breathers Clubs help provide the tools to deal with the impact of your lung disease and to not be afraid to live your life. This isn’t just a place to learn how to deal with your symptoms, it’s a space where you can laugh and joke and talk about things beyond your lungs. People keep coming back because of the connections formed within the group.
Learn more about Better Breathers Clubs at Lung.org/better-breathers.
Blog last updated: March 4, 2024
