Sarcoidosis is a multisystem, inflammatory disease, which can involve all organ systems to a varying degree and extent. Upon diagnosis or afterward, patients are commonly overwhelmed by their disease and frequently ask questions that include: How did I get this disease; Will it spread to all my organs; Will it kill me; which of my other ailments are related to sarcoidosis and do I need treatment for them; Can I expect to live a normal life; Should I be on a special diet; Will my kids inherit sarcoidosis?
While a health care provider can answer these questions and meet their patients’ medical needs, those diagnosed with sarcoidosis often benefit from additional support that offers emotional and social connection. Because coping with the symptoms and uncertainties of the disease can be a strain on both patients and family members, talking about the disease either informally with loved ones or in a group setting can be a significant help.
The Benefits of Social Connection
Recognizing the importance of providing a place where patients’ questions can be answered, Mount Sinai’s Sarcoidosis Program has been hosting a patient-run Sarcoidosis Support Group since 1994. One of the largest support groups for sarcoidosis in the United States, it is a place where patients can empower themselves to learn more about sarcoidosis so they are better able to cope with the disease. Regular meetings provide a forum for patients to share experiences, voice concerns, learn about new therapies, and even hear about research advances.
As a result of participating in the support group, patients are able to lean on each other during the difficult periods of their disease and celebrate with one another when their disease improves. Patients also learn that they are not alone when it comes to dealing with the disease. This feeling of togetherness, in and of itself, often makes patients feel better.
Adam Morgenthau, MD, is an Assistant Professor of Medicine in Mount Sinai’s Division of Pulmonary, Critical Care, and Sleep Medicine. With extensive publications in sarcoidosis, Dr. Morgenthau is also the Director of the Sarcoidosis Clinic and the Alvin S. Teirstein Sarcoidosis Support Group at The Mount Sinai Hospital.