Lifelong Chicago resident Debbie Davis was hospitalized at the age of 49 for a series of symptoms that included dry mouth, swollen lymph nodes and shortness of breath. She was quickly diagnosed with sarcoidosis – a disease that causes your immune system to overreact and cause lung damage, skin rashes, eye disease and more. During April’s Sarcoidosis Awareness Month, the American Lung Association and Foundation for Sarcoidosis Research are partnering to offer support for sarcoidosis patients like Davis through in-person support groups and online tutorials.
Sarcoidosis is an inflammatory disease that causes cells to group together into clumps called granulomas. When too many granulomas form on an organ, they may interfere with the organ’s function. Sarcoidosis can affect any organ in the body; however, lungs and lymph nodes are impacted in more than 90 percent of cases. Although anyone can develop sarcoidosis, it is most common among people between the ages of 20 and 40, and more severe and more likely to be chronic in African-Americans.
“Sarcoidosis is a confusing disease, and symptoms can come and go – making diagnosis difficult,” said Ginger Spitzer, Executive Director of Foundation for Sarcoidosis Research. “With good medical care, most cases of sarcoidosis can be well-controlled. And with a rare disease like sarcoidosis, nearly as important as healthcare is the emotional support that comes from learning and leaning on others impacted by this difficult disease.”
The American Lung Association and Foundation for Sarcoidosis Research will be hosting kick-off events welcoming sarcoidosis patients to the Lung Association’s Better Breathers Clubs in Chicago, Illinois; Indianapolis, Indiana; Jackson, Mississippi; Philadelphia, Pennsylvania; and New York City, New York. Better Breathers Clubs are welcoming support groups for patients and caregivers affected by chronic lung diseases to learn better ways to live with lung disease while getting the support of others in similar situations. Led by a trained respiratory therapist, these in-person adult support groups give participants the tools they need to live an active and healthy life.
“Joining a Better Breathers Club showed me that I wasn’t alone,” said Davis. “While I learned about ways to better manage my sarcoidosis – including pulmonary rehabilitation – I also made friends, many of whom I now consider to be some of my closest friends and allies.”
Throughout the month of April, the two non-profit partners will be offering support through online tutorials that share the latest resources for patients and caregivers, as well as hosting an “Ask The Expert” series on the online support community platform Inspire. From April 15 – 19, Lisa A. Maier, M.D., MSPH, FCCP, Professor of Medicine, Pulmonology and Chief of the Division of Occupational Health and Environmental Health Sciences at National Jewish Health will be answering patient questions.
Patients and caregivers can learn more about sarcoidosis and access live and recorded webinars at Lung.org/sarcoidosis or StopSarcoidosis.org, and join a Better Breathers Club in their community at Lung.org/better-breathers. Registered nurses, respiratory therapists and counselors are also available for one-on-one support through the tollfree Lung HelpLine at 1-800-LUNGUSA or online chat at Lung.org/helpline.