Newly Diagnosed: Taking the First Step on Your Journey

Becoming educated is a good place to start on your journey with sarcoidosis. Whether you are a patient or a caregiver, knowing as much as possible about the disease will help you be a more active participant in your or your loved one’s healthcare. Learn more below about sarcoidosis, its causes, its symptoms, and how it’s diagnosed.


Sarcoidosis is a disease marked by an overactive immune system that leads to the formation of small clumps of inflammatory cells called granulomas in different tissues and organs, affecting how well they work. Over time, granulomas can become calcified or bone-like, and cause permanent damage. Sarcoidosis can be treated with medications but may require a multidisciplinary medical team if multiple organs are affected. In its milder forms, however, the disease may resolve without lasting effects and require only regular monitoring.

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Sarcoidosis can affect almost any part of the body, and different types of the disease are distinguished by where they occur and what organs are affected. Disease types include pulmonary sarcoidosis, cardiac sarcoidosis, cutaneous sarcoidosis, hepatic sarcoidosis, musculoskeletal sarcoidosis, neurosarcoidosis, ocular sarcoidosis, renal sarcoidosis, sarcoidosis of the spleen and bone marrow, and Löfgren syndrome. Patients may experience more than one type of sarcoidosis at once.

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Sarcoidosis is an immune system condition in which the body overreacts to an allergen or an infection and starts to mistakenly attack its own tissues. As a result, small patches of inflammation called granulomas build up over time in body organs. This reaction can run its course or develop into a chronic condition. The exact cause of sarcoidosis is not fully known, but it may be the result of both genetic and environmental factors.

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Because sarcoidosis can attack any organ in the body, it can potentially cause problems in the liver, heart, lungs, gut, bones, muscles, or even the brain. The exact symptoms vary in type and intensity and may resemble those of other diseases or allergic reactions. Some people experience sudden and rapidly escalating symptoms that disappear in a short time; others have symptoms that develop gradually and last longer. In some cases, there are no symptoms, with the disease showing up on a chest X-ray.

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Diagnosing sarcoidosis can be challenging because symptoms vary greatly depending on what organs are involved. Early symptoms are shared with a number of conditions, and a diagnostic test that can specifically distinguish sarcoidosis from others does not exist yet. For these reasons, several tests are needed to exclude other conditions and reach an accurate diagnosis. Some of these diagnostic methods include imaging scans, blood and urine tests, lung function tests, mediastinoscopy, and biopsy.

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Living With Sarcoidosis

Sarcoidosis may resolve by itself within a few years of symptoms first appearing and will not return, or it can be chronic and lifelong. Regardless, the condition can be challenging to live with, especially when the symptoms are at their peak. A number of treatments, lifestyle changes, and the use of support groups can help patients to better manage their disease.

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