What is Sarcoidosis?
You have Sarcoidosis. Now what?
What does that mean? What will happen to me? Can it be cured? What do I do?
All these thoughts and more run through your mind when you are told that you’ve been diagnosed as having a disease called sarcoidosis. This monograph was written to help you understand some of the answers to these and other questions.
Sarcoidosis is a common disease of unknown cause, which may involve every part of the body. Fortunately, most patients with sarcoidosis have no or only minor complaints. It is a disease that produces inflammation, usually in the form of bumps or discolored areas, which are technically called granulomas. These can occur anywhere in or on your body, including internal organs and externally on your skin. It is seen most frequently in the lungs by x-rays. Patients may have involvement of the skin, liver, lymph glands, spleen, eyes, nervous system, musculoskeletal system (the muscles and bones in the body), heart, brain, and kidneys.
About 80% of Mount Sinai Medical Center’s patients need no treatment, and the illness goes away in six months to two years. Sarcoidosis may not produce any noticeable symptoms. Symptoms usually appear slowly, and they may disappear as mysteriously as they came, with or without treatment.
Sarcoidosis is not cancer or tuberculosis, and it is not contagious. It may cause symptoms that can be unpleasant, but it is not usually disabling. Symptoms can include a nagging cough, shortness of breath, swollen/discolored areas on your skin, fatigue, night sweats, eye problems, low-grade fever, joint pain, or a feeling that something just isn’t right. Or you can have no symptoms at all. Symptoms can last for a while and then disappear. But if they last for more than two years, your sarcoidosis is considered chronic. Regardless of the kinds and/or duration of symptoms, your life will probably be relatively normal.
Background & Cause
Sarcoidosis has been known for a long time, but its cause and cure have not been identified. It seems to impact people in many different ways, and can be found amongst family members or co-workers, or as single cases. No one knows if there are reasons why patients with certain organ involvement are found in certain areas of the world. Nor is it known why there can be clusters within families or in work environments. Or why non-smokers tend to be diagnosed more often than smokers. (But don’t start or continue to smoke with sarcoidosis!) Statistics show a higher incidence in health care workers, but that may be a statistical factor attributed to their greater attention to monitoring their own health care. No one knows who is likely to get sarcoidosis.
Why did I get it?
The cause of sarcoidosis is not known. Researchers, including your physicians at Mount Sinai Medical Center, have been working diligently for over 80 years to find the cause so that they can then work toward finding a cure. Their work continues. Sarcoidosis can affect anyone, from any race, socioeconomic, gender, geographic background or age group, although most often it is found in people ranging from 20 to 40 years old. Once viewed to be a rare disease, it is now found worldwide. In the United States, it is more common in African-Americans than whites. At Mount Sinai it is about 50% / 50%.