Sarcoidosis (pronounced SAR-COY-DOE-SIS) is an inflammatory disease characterized by the formation of granulomas, tiny clumps of inflammatory cells, in one or more organs of the body. When the immune system goes into overdrive and too many of these clumps form, they can interfere with an organ’s structure and function. When left unchecked, chronic inflammation can lead to fibrosis, which is permanent thickening or scarring of organ tissue.
This disorder can affect almost any organ in the body, including the heart, skin, liver, kidneys, brain, sinuses, eyes, muscles, bones, and other areas. Sarcoidosis most commonly targets the lungs and the lymph nodes, which are an important part of the immune system. When it affects the lungs, it is called pulmonary sarcoidosis. Ninety percent or more of people diagnosed with the disease have lung involvement.
Disease presentation and severity varies widely among patients. For the purposes of educational purposes, not a clinical standard, FSR recognizes three general categories in which patients may fall into:
In many cases, inflammation can resolve itself without specific therapy and before causing serious damage to the body. Upon initial diagnosis, doctors will assess for danger (organ dysfunction) and the extent to which a patient’s quality of life is impaired. Fatigue and pain syndromes, for example, are common among sarcoidosis patients and can greatly affect quality of life. If the physician does see evidence of organ dysfunction and does not believe that the patient’s quality of life is affected enough to warrant treatment, ongoing monitoring may be warranted.
Sarcoidosis can also go into remission, a period when the disease no longer causes symptoms or problems in the body. More than half of the people will experience remission within three years of their diagnosis, and two-thirds will go into remission within 10 years of diagnosis. Sarcoidosis symptoms can return after remission, but this is not common. Return of disease symptoms and activity after one or more years of remission occurs in less than five percent of patients.
For some people, the disease can be ongoing, causing permanent damage to the body, organ failure, and even death. For pulmonary sarcoidosis patients, some cases result in permanent lung damage. These patients may require portable oxygen and/or a lung transplant. Medical treatment may ease symptoms, improve organ function, and limit damage to the body. However, treatments that work on some patients may not on others, and often the drugs used in treatments can cause other issues. More research is needed for additional treatment options.
While roughly 50% of people with sarcoidosis will go into remission within a year of displaying symptoms, an estimated 10-15% of cases become advanced with severe life-altering effects. It’s estimated that nearly 200,000 Americans live with sarcoidosis, and worldwide prevalence of the disease is estimated at 1,238,000 people.
Despite the best efforts of researchers for more than a century working to better understand the complexities of this disease, sarcoidosis remains difficult to diagnose with limited therapies. Many patients suffer for years before arriving at the correct diagnosis or discovering the best treatment plan, although we’re coming closer to understanding the mechanisms. Learn more about the possible mechanisms by which people develop sarcoidosis.
The Foundation for Sarcoidosis Research (FSR) is dedicated to revolutionizing the way this disease is treated, improving the quality of life for patients, and to finding a cure for this disease. Since its establishment in 2000, FSR has fostered over $4 million in sarcoidosis-specific research and provided resources to tens of thousands of patients worldwide. With strategic funding, efforts to engage patients in research, and by promoting collaboration among researchers worldwide, we are expanding the understanding of sarcoidosis every day.