No two snowflakes are alike and no two individuals with sarcoidosis appear to have identical symptoms. Therefore, we have chosen snowflakes to symbolize sarcoidosis.

Sarcoid Networking Association

Frequently Asked Questions (FAQs)

  • What is sarcoidosis?

    • Pronounced SAR-coy-DOH-sis, it is a multi-system, granulomatous disease that can and does attack any organ of the body. It mimics other diseases, often making diagnosis a long and difficult process. Sarcoidosis, often shortened to Sarcoid, can be acute or chronic. It can go into remission for weeks or months or years. Sarcoidosis is not contagious.
    • National Heart, Lung, and Blood, Institute (NHLBI) fact sheet on Sarcoidosis

  • What causes sarcoidosis?

    • The cause of Sarcoidosis is unknown.  Researchers suspect several possibilities:
      –       A viral or bacterial infection
      – A defect in the immune system
      – Exposure to a toxic substance
      – Unknown environmental trigger
      – An inherited or genetic factor

  • Who can develop sarcoidosis?

    • Sarcoidosis affects all races and age groups. Usually it is diagnosed in young adults between the ages of 20 and 40 years. But every age group has newly diagnosed patients – from very young children to senior citizens in their 90’s.   More women than men seem to be affected. Sarcoid is found world-wide, but appears to be more common among those of Northern European ancestry. “In the United States it appears that more Afro-Americans have sarcoidosis and is more prevalent among women then men.”

  • What is a granulonoma?

    • Granuloma is a round or oval nodule that consists of inflammatory cells. Lymphocytes, epithelioid cells and giant cells  are the main constituents of a sarcoid granuloma. Because these nodules are solid and have no holes, they are referred to as ‘non-caseating granulomas’. These granulomas ultimately become scar or fibrosis.

  • How is sarcoidosis diagnosed?

    • A physician takes an extensive medical history from the patient, and does a thorough physical examination including blood work, pulmonary function tests (PFT) and x-rays. An Ophthalmologist may do a complete eye examination to rule out any disease process. Other diagnostic tests can include a Gallium Scan, CT scan, MRI and/or removal (biopsy) of a small piece of tissue from a suspected area.  Examination of this specimen under a microscope will identify any granulomas present.

  • What areas of the body can develop sarcoidosis?

    • Although the lungs are commonly involved with sarcoidosis in over 90% of patients, the eyes and skin are the second most common organs affected. Any lymph nodes, joints, muscles, bones, heart, liver, kidney, the nervous system, spleen and any other organ can develop granulomas. Today, sophisticated technology is making the diagnosis of Sarcoidosis more quickly and easily.

  • What are the symptoms?

    • Symptoms depend on the organ involved with granulomas. Some people have no symptoms at all and diagnosis is made accidentally. Sometimes a person may have a low grade temperature and/or night sweats. Breathing problems, such as  shortness of breath, cough, or wheezing may not be present.  Swollen lymph nodes may be felt or seen on an x-ray. Blurred vision, light sensitivity, redness,  pain in the eyes may suggest sarcoidosis. Tear glands may also be involved. Skin granulomas can appear anywhere on the body. Lupus Pernio is a characteristic of sarcoid granuloma. Several persistent skin rashes can be suspect for sarcoidosis. Another condition, Erythema Nodosum, is associated with sarcoidosis and other inflammatory disorders. Joint swelling, similar to arthritis, can indicate sarcoidosis. The pain and tenderness are most common around ankles, knees, wrists and fingers. Less common bone cysts of sarcoid can be seen on x-ray examination. Granulomas in the nervous system cause the brain and nerves to work improperly. Symptoms can include pain, tingling, numbness, or loss of sensation. Heart involvement may be suspected if there is a history of any abnormal cardiac symptoms or irregular heart rate.

  • How is it treated?

    • In many cases, the symptoms of the disease goes away without any treatment. The physician may choose to follow the patient for several months with periodic PFTs and chest x-rays. When therapy is indicated, the first drug of choice is usually a corticosteroid such as Prednisone. Other immune suppressants such as Imuran, methotrexate or Cytoxin, or drugs used to treat disorders like arthritis and asthma, may be used instead of or with Prednisone. In rare cases, transplant of the affected organ may be necessary to give quality of life.

    • Sarcoidosis is not usually fatal. With early diagnosis and appropriate treatment, many people live quality lives with some lifestyle changes.

  • Other information links …

The SARCOID NETWORKING ASSOCIATION was founded in 1992 to educate individuals, provide information and heighten public awareness about sarcoidosis.

For detailed information about our 501(c)(3) status, go to www.guidestar.org.