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PATIENTS & PUBLIC

Sarcoidosis

What is Sarcoidosis?
Sarcoidosis is an inflammatory disease that affects multiple organs in the body, but mostly the lungs and lymph nodes. Nearly one in three people with sarcoidosis also have it on their skin. Individuals with cutaneous (skin) sarcoidosis may develop “fleshy” or skin-colored bumps (granulomas) under the skin.  The finding of granulomas is helpful to the doctor in making a diagnosis.

What does Sarcoidosis look like on the skin?
In people with skin of color, sarcoidosis can appear as raised bumps or lesions that are often red-brown to violet in color. These can appear anywhere on the body but are more commonly found on the face, lips, back of the hands, arms, legs, and scalp. Lesions may be itchy and painful, and can leave scars or changes in the skin color as they heal. The specific type of skin sarcoidosis can also influence its appearance. For instance, lupus pernio, a chronic form of cutaneous (skin) sarcoidosis, often presents as hard, purplish lesions on the nose, cheeks, ears, and fingers. Erythema nodosum, another skin manifestation of sarcoidosis, typically appears as red, tender bumps, often located on the front of the legs. It is important to note that skin involvement in sarcoidosis can look different from person to person and across different skin tones. Diagnosis of sarcoidosis can be confirmed by taking a small sample of the skin (or a skin biopsy).

Who does sarcoidosis affect?
Sarcoidosis can affect people of all races and ages. However, the disease usually begins between the ages 20 and 40. It is more common in Black people, and also tends to be more severe and cause more symptoms in Black individuals. People who have a close relative with sarcoidosis are more  likely to develop the condition. 

What causes sarcoidosis?
The exact cause is unknown. Some researchers suspect that bacteria, viruses or chemicals might trigger the disease. It may also be a type of autoimmune disease associated with an abnormal immune response. 

How do I know if I have sarcoidosis?
Because of all the different ways in which sarcoidosis may present, it can be a difficult diagnosis to make. New skin lesions are always important for a dermatologist to examine. If you have skin lesions suspicious for sarcoidosis, your dermatologist may take a small piece of it, called a biopsy, to examine under the microscope. If you notice other changes to your body, such as difficulty in breathing or vision changes, please let your doctor know. Your doctor can use other tools, such as x-rays of your chest, to look for lymphadenopathy or lung involvement that may explain your symptoms.

What are the best treatments for sarcoidosis?
Many individuals with sarcoidosis do not need treatment because the granulomas are small or resolve over time. For people who have granulomas that are disfiguring or cause problems such as difficulty breathing, treatments are available. For example, topical steroids may be effective for occasional small lesions on the skin. Topical steroids must be used under a doctor’s guidance as they can cause the skin to become thin. For larger skin lesions, your dermatologist may recommend injection of the lesion with steroids. Some cases are severe enough to require taking steroids by mouth. Symptoms of sarcoidosis usually improve on oral steroids, but one must balance the positive effects steroids have on the disease against the negative side effects such as weight gain, mood changes, and difficulty sleeping. There are other immunosuppressive medications that can be used in more advanced cases of sarcoidosis. These drugs have their own side effects that your doctor will discuss.