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Answers to Your Questions about Sarcoidosis

By Roslyn F. Schneider, MD, MSc - This article originally published on Get Healthy Stay Healthy

What is Sarcoidosis?
Sarcoidosis is an illness characterized by inflammation in almost any organ in the body and often involves the lungs. The inflammation in sarcoidosis is called granulomatous inflammation.

That means that in biopsy samples taken from the affected organs of people with sarcoidosis, abnormal clumps of immune and inflammation cells (granulomas) can be seen under the microscope.

What Happens in the Immune System in Someone with Sarcoidosis?
Immune and inflammation cells are part of our defense mechanisms to fight off infection and repair injury, but sometimes these cells cause damage instead. In people who are more susceptible to infections and who are in contact with certain environmental circumstances, some evidence shows that an infection triggers a cascade of immune and inflammatory responses. In sarcoidosis, the inflammation can cause symptoms that:

  • Resolve on their own—this happens in up to 50% of the people who have it
  • Flare up periodically
  • Progress to more severe complications

In less than 5% of people with sarcoidosis, this can lead to death, usually from heart or advanced lung involvement.

What Causes Sarcoidosis?
The exact cause of sarcoidosis isn’t known. It may be that exposure to something foreign to the body (an antigen) triggers a response by the immune system to cause sarcoidosis. Scientists have been researching and making progress to discover what that something or somethings may be.

Who Gets Sarcoidosis?
It’s usually recognized in people between 20 and 50 years of age. It affects people all over the world but is more common in African Americans and in people of Nothern European descent.

Do People of Different Ethnic Groups React Differently to the Disease?
The pattern of how the disease affects people and whether it resolves on its own seems to depend on whether the person with sarcoidosis is of Northern European or African American descent. Though further research is needed, this suggests that the interactions between genetics and environmental exposures may be important.

What are the Symptoms of Sarcoidosis?
Up to half of the people who have sarcoidosis have no symptoms at all when they’re first diagnosed with the disease. Depending on the body parts affected, some of the symptoms may be:

  • Shortness of breath
  • Chest pain
  • Fever
  • Fatigue
  • Joint or muscle pain
  • Eye problems
  • Skin changes
  • Irregular heart rhythms

Why is Sarcoidosis Sometimes Diagnosed Years After Symptoms Develop?
Sarcoidosis is difficult to diagnose because it can look similar to other illnesses that are caused by:

  • Infections in the tuberculosis family
  • Bacteria that cause acne
  • Certain fungal infections
  • Environmental exposure to dusts of beryllium and others

Additionally, some symptoms and test results are similar to what can be seen in some cancers.

Can I Be Tested for Sarcoidosis?
While there is no single test that can provide a conclusive diagnosis of sarcoidosis, some features of the disease can be detected by a physical examination, x-rays, biopsies, and breathing and blood tests.

How Can I Get the Appropriate Treatment for Sarcoidosis?
People with sarcoidosis often need to consult several specialist physicians to get a correct diagnosis and to manage the disease. In order to diagnose the disease properly, your doctor will ask you to provide a complete history of your:

  • Past illnesses
  • Occupations
  • Travel
  • Environmental and other exposures

After you receive a diagnosis, it’s important to have careful medical follow-up to make certain that it is not another condition which may require different management.

Dr. Roslyn F. Schneider is the Global Patient Affairs Lead driving patient-centricity within Pfizer's Medical Organization. Previously, she was in clinical practice and medical education for twenty years in New York City.

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