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What is sarcoidosis?

Sarcoidosis is an inflammatory disease that can appear in almost any body organ, but most often starts in the lungs or lymph nodes. The disease also can affect the liver, skin, heart, nervous system and kidneys. No one yet knows what causes sarcoidosis. It can appear suddenly and then disappear. Or it can develop gradually and produce symptoms that come and go, sometimes for a lifetime.

As sarcoidosis progresses, small lumps--granulomas--appear in affected tissues. While these granulomas frequently clear up, with or without treatment, sometimes they do not heal. In these cases, the tissues tend to remain inflamed and become scarred (fibrotic).

What are the symptoms of sarcoidosis?

Generally, shortness of breath and a cough that will not go away are among the first symptoms of sarcoidosis. The disease also can show up suddenly with the appearance of skin rashes. Red bumps on the face, arms or shins and inflammation of the eyes also are common symptoms. It is not unusual, however, for sarcoidosis symptoms to be more general: weight loss, fatigue, night sweats, fever or an overall feeling of ill health.

Patients can have symptoms related to the specific organ affected, they can have only general symptoms or they can be without any symptoms whatsoever. Symptoms can vary according to how long the illness has been under way, where the granulomas are forming, how much tissue has become affected and whether the granulomatous process is still active.

Who gets sarcoidosis?

Once considered a rare disease, sarcoidosis is now known to be a common chronic illness that appears all over the world. Indeed, it is the most common of the fibrotic lung disorders.
Anyone can get sarcoidosis. It occurs in all races and in both sexes, but mainly in people between 20 and 40 years of age. The risk is greater if you are a young African-American adult (especially a woman) or of Scandinavian, German, Irish or Puerto Rican origin. White women are just as likely as white men to get sarcoidosis but, among African Americans, females get sarcoidosis two times as often as males.

How common is sarcoidosis?

Because sarcoidosis can escape diagnosis or be mistaken for several other diseases, it is only possible to guess how may people are affected. The best estimate today is that about five in 100,000 white people in the United States have sarcoidosis. Among African Americans, it occurs in probably 40 out of 100,000 people.

In Illinois, deaths attributed to sarcoidosis steadily increased between 1969 and 1994. It is unclear whether the number and rate are up due to increased occurrence of the disease, increased recognition and reporting, or both. The year with the most recorded sarcoidosis deaths--36--was 1992. The three-year mortality rate was 0.8 deaths per million population for 1969-71, 1.2 for 1974-76, 1.6 for 1979-81, 2.0 for 1984-86, 2.6 for 1989-91 and 2.8 for 1992-94.

How is sarcoidosis diagnosed?

Preliminary diagnosis of sarcoidosis is based on the patient's medical history, routine tests, a physical examination and a chest X-ray. The physician confirms the diagnosis by eliminating other diseases with similar features, for example, tuberculosis, farmer's lung disease, fungal infections, rheumatoid arthritis, rheumatic fever and cancer of the lymph nodes. Many of the tests used to help diagnose sarcoidosis can help the patient's physician follow the progress of the disease and determine whether it is getting better or worse.

How is sarcoidosis treated?

Fortunately, many patients with sarcoidosis require no treatment, especially those whose symptoms are not disabling. Many times, the symptoms will disappear spontaneously.
When therapy is recommended, the main goal is to keep the lungs and other affected body organs working and to relieve symptoms. The disease is considered inactive once the symptoms fade. Corticosteroids (usually prednisone) remain the primary treatment for inflammation and granuloma formation. There is no treatment at present to reverse the fibrosis that might be present in advanced sarcoidosis.

Because sarcoidosis can disappear even without therapy, physicians sometimes disagree on when to start the treatment, what dose to prescribe and how long to continue medication. One determining factor is the organ system involved and how far the inflammation has progressed. If the disease appears to be severe--especially if it is in the lungs, eyes, heart, nervous system, spleen or kidneys--the physician may prescribe corticosteroids. These medications usually result in improvement. Symptoms can reappear, however, after the medication is stopped. Treatment, therefore, may be necessary for several years--sometimes for as long as the disease remains active or to prevent relapse.

It is important for those with sarcoidosis to have frequent checkups so that the physician can monitor the illness and, if necessary, adjust the treatment. Corticosteroids, for example, can have side effects--mood swings, swelling and weight gain from fluid retention, high blood pressure, high blood sugar and craving for food. Long-term use can affect the stomach, skin and bones, bringing on stomach pains, ulcers, acne or loss of calcium from bones. If corticosteroids are taken in carefully prescribed low doses, however, the benefits from the treatment are usually far greater than the problems.

Where can I get more information about sarcoidosis?

For the names of U.S. scientists studying sarcoidosis or physicians specializing in the disease, write to the National Heart, Lung and Blood Institute, Division of Lung Diseases, 2 Rockledge Center, 6701 Rockledge Drive, MSC 7952, Suite 10018, Bethesda, MD 20892-7952. Publications on the disease are available from the National Institute of Allergy and Infectious Diseases, 9000 Rockville Pike, Building 31/Room 7A32, Bethesda, MD 20892; or from the Sarcoidosis Family Aid and Research Foundation, 460A Central Ave., East Orange, NJ 07018.

The following organizations can provide additional information about the disease and about support groups: Sarcoidosis Networking, 13925 80th St. East, Puyallup, WA 98372 (206-845-3108, voice/fax); National Sarcoidosis Resource Center, P.O. Box 1593, Piscataway, NJ 08855-1593 (908-699-0733, voice; 908-699-0882, fax); and Sarcoidosis Research Institute, 3475 Central Ave., Memphis, TN 38111 (901-327-5454, voice; 901-452-1470, fax); National Sarcoidosis Network of America, Inc., P.O. Box 21334, Chicago, IL 60621 (773-536-7754, voice). Persons seeking to locate support groups in Illinois may call the Chicagoland Sarcoidosis Support Group Association at 773-285-2608 or 773-723-6188.