Learn About Sarcoidosis

Key Facts

• Sarcoidosis is an inflammatory disease in which the immune system overreacts, causing groups of cells to form clusters of inflamed tissue called "granulomas" in one or more organs of the body.
• Sarcoidosis most commonly affects the lungs and lymph nodes, but it can affect any organ including the eyes, skin, heart and nervous system.
• Sarcoidosis is a rare disease with 150,000-200,000 cases in the United States per year and approximately 27,000 new cases per year.
• Lofgren’s syndrome is an acute, milder form of sarcoidosis that usually goes away within six months to two years after diagnosis.
• Black women are three times more likely to be diagnosed with sarcoidosis than White women, tend to have more severe disease, are more likely to be hospitalized and have a higher mortality rate.
• In severe cases, sarcoidosis can be life-threatening if it progresses to heart or severe lung disease.
• Severe fatigue can impact up to 70% of patients with sarcoidosis even when inflammation is controlled with medication. Fatigue can be disabling, and lead to loss of work.

How Sarcoidosis Affects Your Body

While the causes of sarcoidosis are not known, it is associated with increased immune system activity. This causes clusters of immune cells called granulomas to infiltrate your organs and lymph nodes. Sarcoidosis most commonly affects your lungs and lymph nodes, but it can affect any organ in your body. The symptoms of sarcoidosis vary depending on which organs are affected by the disease as well as its severity.

Sarcoidosis in the lungs is often separated into the “Scadding stages” based on the chest X-ray. There are five Scadding stages, Stage 0 through Stage 4. The stages use the location of the granulomas in the lungs and lymph nodes, to predict the chance of the disease resolving on its own, with lower stages being more likely to resolve or not need treatment. At each stage you can have serious symptoms. You also can move between the stages of sarcoidosis. Patients of any Scadding stage can have involvement of other organs from sarcoidosis.

Another way to describe the severity of sarcoidosis is by how many organs are involved. Like in the lungs, sarcoidosis in organs other than the lungs can range from mild to severe. The most common organs other than the lungs to be involved are the skin and eyes. Some organs, like the liver and spleen, can be involved with sarcoidosis and do not need treatment. Other organs, like the heart and brain, usually need treatment if they are involved. It is important when diagnosed with sarcoidosis that your doctor looks carefully for signs of sarcoidosis in organs outside of your lungs.

Who Is at Risk?

The cause of sarcoidosis is unknown, but it seems to have both a genetic and an environmental component. When someone is at risk of developing sarcoidosis is exposed to a trigger like an infection or environmental exposure, their immune system may overreact and start the development of the disease. Risk factors for sarcoidosis include:

• Living or working near insecticides, dusty or moldy environments 
• If you are of African or Scandinavian descent  
• It is more common in women 
• If you are between 30 to 50 years of age 
• Family history or genetics 
• Medications taken for other health issues can increase your risk such as those taken to manage HIV and treat cancer. 
• Some other medical conditions, such as lymphoma, can increase your risk 
• Exposure to burn pits during military deployments