Dear Alice,

What is sarcoidosis and what are its symptoms? What is the prognosis? Why do people get it?

Dear Reader,

Because of its vague nature, discussing sarcoidosis is a bit like describing the shadows of clouds rather than the clouds themselves. Sarcoidosis (pronounced: sar-coy-doe-sis) is a somewhat mysterious disease characterized mostly by its symptoms, because they can be observed and described, and less by its causes, which are unknown, or its treatments, which are often unnecessary.

This curious condition can affect any organ or system in the body and can involve several parts of the body, only one, or in some cases, none at all. The most common symptoms of sarcoidosis involve inflammation of organs or systems. The lungs are the most frequently impacted organs with about 88 percent of people with the disease experience coughing and chest pain, and sometimes trouble breathing. The skin is also commonly affected — roughly 30 to 50 percent of sarcoidosis-sufferers find rashes or small bumps on their skin. About 25 percent develop some problem with their eyes — whether they become dry or watery, their tear glands swell, or they have trouble seeing (but, thankfully, almost never have blindness). And for the final statistic, the livers of about 20 percent of people with sarcoidosis become enlarged or inflamed. Other rare symptoms can include muscle weakness, paralysis, seizures, tremors, poor coordination, hearing loss, joint stiffness, and kidney stones.

While the cause of sarcoidosis is unknown, information about its incidence has been studied. In the United States, sarcoidosis is most prevalent in adults between the ages of twenty and forty, is more common in women than in men, and is more common in those of African descent than in other ethnicities. If you suspect that you have sarcoidosis, it's a good idea to make an appointment to see your primary health care provider. She or he will likely perform a physical exam, take a blood test, and possibly take an x-ray and a tissue sample. Word to the wise: because of its vague and elusive nature, the diagnosis of sarcoidosis can be a hard one to make. Therefore, it could be wise to seek out a doctor and/or treatment center with a declared interest or expertise in sarcoidosis.

If your disease is mild, you may not need any treatment. Your health care provider will probably only treat sarcoidosis with medicine if it involves your kidneys, eyes, heart, nervous system, or lungs (especially if breathing difficulties are involved). If it is determined you would benefit from pharmaceutical intervention, corticosteroids are the most commonly prescribed drug for sarcoidosis. While they do not cure the disease, they can relieve symptoms and prevent the development of any irreversible damage to organs or tissues. However, about 60 percent of people with sarcoidosis recover on their own without any treatment.

More good news is that, while the rash or swelling one develops from sarcoidosis may not look pretty, it is not contagious. There is some evidence that the disease can be genetic, but more research is needed to confirm this. While the symptoms, prognosis, and treatment are described here, the answer to your question "why do people get it?" remains unclear. Until sarcoidosis is better understood, we'll just have to sit back, gaze at the shadows of clouds, and wait for the scientists to tell us when they know.

Last updated Apr 22, 2015
Originally published May 22, 2009

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