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Frequently Asked Questions About Sarcoidosis

What is sarcoidosis?
Sarcoidosis is an inflammatory disease that causes tiny collections of inflammatory tissue (granulomas) in different parts of the body—most commonly in the lungs, skin, and lymphatics.

Who gets sarcoidosis?
Sarcoidosis was thought to be an uncommon disease in the past, but is now known to affect thousands of patients.

It affects a variety of people, but in general a younger population, females more than males and some races more than others, including African American and European populations.

What are the signs and symptoms of sarcoidosis?
Sarcoidosis can present without any symptoms in some patients with only imaging pointing towards disease. As the disease can involve multiple organs, the symptoms might be variable. Sometimes these can be non-specific, such as fever, night sweats, fatigue, weight loss, poor appetite. Lungs are the most commonly involved organs and hence, cough, shortness of breath and other respiratory symptoms can be the presenting features. Skin rash, joint pain and red eyes can occur commonly as well. The symptoms also depend on how long the disease has been there, as well as on age, sex and race.

Is there a cure for sarcoidosis? What is the treatment like?
There is no cure for sarcoidosis and, in some cases, it is not necessary to treat the disease because it frequently goes away on its own. When treatment is necessary, the doctor may prescribe steroids and other medications to suppress inflammation in the body.

How is sarcoidosis diagnosed?
Sarcoidosis is diagnosed based on your signs and symptoms, as well as your medical history, family history, and test results. Your doctor may perform an imaging test, such as a chest X-ray, CT scan, PET scan or MRI. They may then take a biopsy by taking a small amount of tissue to study in a laboratory.

If my sarcoidosis goes away, will it come back?
In some cases sarcoidosis may go away for a period of time and then come back. In other cases, individuals with sarcoidosis may experience “flare ups” of symptoms with other periods that are asymptomatic.

Can sarcoidosis spread to my family?
No. Sarcoidosis can run in families, but it does not spread the same way as bacteria or a virus.

Can I maintain my current lifestyle with this diagnosis?
As with any disease, you should maintain a healthy lifestyle that includes being active and eating well while avoiding cigarette smoking and excessive alcohol intake. Be sure to take your prescribed medications regularly and keep in contact with your medical team.

Is it safe for me to continue working?
Certain occupations and occupational exposures have been linked to sarcoidosis. Ask your doctor if he or she believes your disease could be related to exposure through your workplace.

What is my risk if someone in my family has sarcoidosis?
Sarcoidosis can run in some families, but a clear inheritance link has yet to be established in the same way that eye color is passed from parents to children.

Is sarcoidosis a form of cancer?
Sarcoidosis is not cancer. Because the inflammatory tissue clusters together, sometimes the disease appears similar to cancer in imaging studies like CT and PET scans.

I was told I have asthma (or Chronic Obstructive Pulmonary Disease) before my sarcoidosis diagnosis. Do I have both?
Sarcoidosis may appear as asthma or COPD on testing, and may be treated similarly with inhaled mediations. However, your symptoms and testing are likely related to sarcoidosis alone. In uncommon cases, these diseases might coexist.

What are the benefits of treating sarcoidosis at a specialized center?
Receiving care from a specialized center offers you the opportunity to be supported by multidisciplinary medical professionals who are experienced in working with sarcoidosis in particular, as well as related areas such as pulmonary hypertension and lung transplantation. The center may also offer additional services such as opportunities for advanced education about your disease, support groups, and clinical trials.

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