Sarcoidosis

What is Sarcoidosis?

Sarcoidosis (sar-coy-DOE-sis) is an inflammatory, autoimmune, and multi-systemic disease for which the cause and cure are unknown. The immune system of those diagnosed overreacts and produces inflamed tissue referred to as granulomas, nodules, or lumps, which attack organs and systems throughout the body.  Sarcoidosis commonly affects the lungs, but can also occur in the nervous system, brain, lymph nodes, skin, eyes, heart, liver, spleen, or any areas of the body.

What are the Risk Factors for Sarcoidosis?

While the cause of sarcoidosis is unknown, it is hypothesized that a combination of genetic and environmental factors contributes to its occurrence. Sarcoidosis has a world-wide distribution, and can affect people of every race, sex, and age; however, people of African, Scandinavian, Irish, Asian, German, and Puerto Rican descent appear to have a higher prevalence of the disease. Sarcoidosis is not contagious, and often appears in patients between the ages of 20 and 40. Once considered a rare disease, it is now estimated that there are approximately 180,000 – 200,000 cases of sarcoidosis per year within the United States.

What are the Symptoms of Sarcoidosis?

Sarcoidosis can involve any organ within the body and has varied symptoms, which means it often mimics other diseases. Sarcoidosis is often difficult to diagnose, and is sometimes misdiagnosed. It is important to obtain an early diagnosis of sarcoidosis to prevent organ failure.

Sarcoidosis manifests itself and impacts people differently. Some people have reported having no symptoms at all, and were accidentally diagnosed with the disease; whereas the disease has been extremely serious and fatal to others. In some cases the disease can be frustrating, inconvenient, and can cause a wide spectrum of illness and discomfort, but is not necessarily life-threatening. However, in severe cases of the disease, especially when major organs such as the lungs, heart, and central nervous system are involved, the disease can be life-threatening.

How Do You Diagnose and Treat Sarcoidosis?

Since sarcoidosis is complex and presents in a variety of ways, there is no one diagnostic tool used to diagnose sarcoidosis. The majority of sarcoidosis patients are diagnosed through exclusion methods, meaning doctors test for other diseases and infections that may cause their symptoms. This can include physical exams, imaging, biopsies, scans, and other tests to determine organ function. 

There is no cure for sarcoidosis, but in many cases it goes away on its own. Sarcoidosis patients with no symptoms or mild symptoms may not even need treatment. The severity of your sarcoidosis symptoms will determine what type of treatment is needed. Treatment can include medications like corticosteroids and immunosuppressants, NSAIDS like ibuprofen or aspirin, and in severe cases, organ transplants.

Does Sarcoidosis Impact Quality of Life? 

Sarcoidosis is a very complex disease. There are numerous factors which adversely impact the quality of life for sarcoidosis patients. Sarcoidosis patients must contend with the complications and symptoms of the disease. In addition many patients are faced with societal perceptions because they don’t necessarily “look sick” and their family and friends may question the validity of their disease, wondering why they are no longer able to function, perform or engage in work or play; or participate in everyday activities. Some patients experience a certain level of stress and anxiety as there are many unknowns associated with the disease. Patients have no understanding of the origin of sarcoidosis; its cause has been elusive, there is no known cure, and patients are often treated with medications for which there are numerous adverse and long term side effects. A huge issue for many patients is an unexplainable overwhelming fatigue which impacts every aspect of their lives. Quality of life issues can impact relationships with spouses, significant others, family, friends, colleagues; as well as affect the patient’s self-esteem. The magnitude of quality of life issues can be totally devastating which can result in feelings of bewilderment, fear, and depression for the patient.

Are There Additional Resources for Sarcoidosis Patients?

Receiving a sarcoidosis diagnosis can have many emotional and mental effects. If you or someone close to you has been diagnosed with sarcoidosis, you may be wondering if additional resources are available. In addition to national and international organizations who participate in sarcoidosis research, there are a multitude of support groups and professional organizations that can help guide you through your diagnosis and subsequent treatment plan.