Information For Patients
- What is Sarcoidosis
- Symptoms of Sarcoidosis
- Course of the disease
- Support Resources for Patients and Families
- Search links to the Medical Literature on sarcoidosis
- Health Information Searches
Much of the material explaining sarcoidosis and its treatment is abstracted from online information provided by the National Institutes of Health. See the complete reference here.
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What is Sarcoidosis?
Sarcoidosis is a systemic granulomatous disease of unknown etiology that primarily affects the lung, although multi-organ involvement frequently occurs.
Sarcoidosis (sar”koi-do’sis) involves inflammation that produces tiny lumps of cells in various organs in your body. The lumps are called granulomas (gran”u-lo’mahs) because they look like grains of sugar or sand. They are very small and can be seen only with a microscope. These tiny granulomas can grow and clump together, making many large and small groups of lumps. If many granulomas form in an organ, they can affect how the organ works. This can cause symptoms of sarcoidosis.
Sarcoidosis is not a form of cancer.
Sarcoidosis was identified in the late 1860s. Since then, scientists have developed better tests to diagnose it and made advances in treating it.
Sarcoidosis almost always occurs in more than one organ at a time. Sarcoidosis can occur in almost any part of your body, although it usually affects some organs more than others. It usually starts in one of two places:
Sarcoidosis also often affects your:
Less often, sarcoidosis affects your:
Rarely, sarcoidosis affects other organs, including your:
Symptoms of Sarcoidosis
Sarcoidosis has an active and a nonactive phase:
- In the active phase, the granulomas form and grow. In this phase, symptoms can develop, and scar tissue can form in the organs where the granulomas occur.
- In the nonactive phase, the inflammation goes down, and the granulomas stay the same size or shrink. But the scars may remain and cause symptoms.
The course of the disease varies greatly among people.
- In many people, sarcoidosis is mild. The inflammation that causes the granulomas may get better on its own. The granulomas may stop growing or shrink. Symptoms may go away within a few years.
- In some people, the inflammation remains but doesn’t get worse. You may also have symptoms or flare-ups and need treatment every now and then.
- In other people, sarcoidosis slowly gets worse over the years and can cause permanent organ damage. Although treatment can help, sarcoidosis may leave scar tissue in the lungs, skin, eyes, or other organs. The scar tissue can affect how the organs work. Treatment usually does not affect scar tissue.
Changes in sarcoidosis usually occur slowly (e.g., over months). Sarcoidosis does not usually cause sudden illness. However, some symptoms may occur suddenly. They include:
- Disturbed heart rhythms
- Arthritis in the ankles
- Eye symptoms
In some cases, eye symptoms may be the only symptom of sarcoidosis.
In some serious cases in which vital organs are affected, sarcoidosis can result in death.
There is no known way to prevent sarcoidosis.
Sarcoidosis was once thought to be an uncommon condition. It’s now known to affect tens of thousands of people throughout the United States. Because many people who have sarcoidosis have no symptoms, it’s hard to know how many people have the condition.
Because of the many uncertainties about the pathogenesis, course, and management of sarcoidosis, the National Heart, Lung, and Blood Institute convened a working group to identify future research directions and opportunities for sarcoidosis. These include developing a tissue bank, using novel methods to identify genetic factors, studying the immunopathogenesis with human tissue and animal models, exploring new approaches to diagnose and manage disease, and, finally, conducting randomized controlled trials to assess new therapies.
The Boston University School of Medicine has ongoing research into sarcoidosis and other lung disorders.
Support Resources for Patients and Families
List of Support Groups for Sarcoid Patients and their Families
Ocular Sarcoidosis: Uveitis Online Support Group
Search the Medical Literature: Sarcoidosis and Its Treatment
This section is designed to help you search the medical literature using the resources of the National Library of Medicine. Use the links below to browse the medical literature on sarcoidosis and its treatment, or create your own searches by going to PubMed.gov.
- Lit search: Sarcoid disease (all articles)
- Lit search: Sarcoid disease in children
- Lit search: Treatment of sarcoidosis
Organ Specific Literature Searches
- Lit search: Sarcoidosis and the lungs
- Lit search: Sarcoidosis and lymph nodes in the chest cavity
- Lit search: Sarcoidosis and the eyes
- Lit search: Sarcoidosis and the skin
- Lit search: Sarcoidosis and the liver
- Lit search: Sarcoidosis and the spleen
- Lit search: Sarcoidosis and the brain
- Lit search: Sarcoidosis and nervous system
- Lit search: Sarcoidosis and the heart
- Lit search: Sarcoidosis and the tear glands
- Lit search: Sarcoidosis and the salivary glands
- Lit search: Sarcoidosis and bones and joints
- Lit search: Sarcoidosis and the thyroid gland
- Lit search: Sarcoidosis and the breasts
- Lit search: Sarcoidosis and the kidneys
- Lit search: Sarcoidosis and the reproductive organs
Health Information, Medications, Diseases and Information Sheets
Use this link to search hundreds of data bases maintained by the National Institutes of Health. Links to Health Information, Medications, Diseases and Information sheets.