Sarcoidosis is a multisystem inflammatory disease that can be hard to diagnose. As a result, researchers don’t know exactly how many people have sarcoidosis, but they estimate it affects between 5 to 40 people out of every 100,000 in the United States. If you have recently heard of sarcoidosis, you may have questions about the disease, like how sarcoidosis is diagnosed, is sarcoidosis hereditary, what causes sarcoidosis flare-ups, and more. What is sarcoidosis? Sarcoidosis occurs when granulomas, small collections of inflammatory cells, form throughout the body. It is not an infection or a type of cancer. Sarcoid also affects blood vessels (vasculitis), interfering with healthy tissue oxygenation. The most common body parts affected by sarcoidosis are your lungs and lymph nodes, although it can also affect your skin, eyes, and other body organs, like your kidneys and heart. The granulomas may heal and disappear on their own, but they also may stay where they are, becoming inflamed. They can then scar over in place. If this occurs in the lungs, it affects how well you breathe. If it occurs in your kidneys, it can affect your kidney function, causing kidney failure. Not all granulomas cause serious damage, but they still can be disturbing. Sarcoidosis can cause granulomas to form on your skin, causing rashes or red bumps, leaving disfiguring sores, even on the face. What causes sarcoidosis? Doctors don’t know what causes sarcoidosis. They do know that your body produces an abnormal immune response and it begins to attack itself. Some researchers suspect sarcoidosis is hereditary, and that some people have a higher risk of developing the disease after they have been exposed to certain bacteria or chemicals that could be triggers. Researchers do know sarcoidosis occurs more often among African Americans, and their symptoms may be more severe. The disease is most often diagnosed among people between ages 20 and 40, and more women than men are affected. What are some sarcoidosis symptoms? One of the reasons why sarcoidosis can be difficult to diagnose is the symptoms are not the same for everyone who has the disease. In addition, some people experience a sudden onset of symptoms, which then go away on their own. Others have symptoms all the time once they appear. Sarcoidosis symptoms are also related to the part of the body or the body system affected by the granulomas, so a group of people with sarcoidosis could all have different symptoms. The most common sarcoidosis symptoms include: Shortness of breath or difficulty breathing Coughing Chest pain Red or purple bumps or rash, often on the lower leg Sores on the face, particularly the nose, cheeks and ears Bumps or skin growths Itchy eyes Eye pain Blurry vision Eyes sensitive to the light Fatigue Fainting Irregular heartbeat Palpitations (fluttering feeling with the heartbeat) Joint and muscle pain Hearing loss How is sarcoidosis diagnosed? Since sarcoidosis can have such different presentations, your doctor may have to do several tests before making a diagnosis. First, your doctor will take your medical history, including if anyone else in your family has sarcoidosis. A physical exam will look at your overall health and if there are any growths, sores, or other obvious issues caused by granulomas. Your doctor may also do tests to rule out other diseases or conditions, before diagnosing sarcoidosis. Some of the more common diagnostic tests include: Blood tests, to check your overall health as well as to see if you express the HLA-B27 gene, an informative biomarker for sarcoid Urine tests, to check how well your kidneys are functioning Chest x-rays, to visualize your lungs and heart Pulmonary function tests, to see how well your lungs are functioning Bronchoscopy, to allow your doctor to see inside your airway and lungs and acquire tissue samples Imaging tests, such as a computed tomography scan (CT scan), to see your heart and lungs in more detail Electrocardiogram (ECG) to check your heart’s rhythm Eye exam, to see if your eyes have conjunctival granulomas, iritis, or retinal vascular changes Biopsies of the lesions or sores How is sarcoidosis treated? For up to one-third of people with symptoms of the disease, sarcoidosis goes away as mysteriously as it appeared. There is no cure for the disease, so treatment is based on relieving symptoms and trying to prevent damage to your body. If your symptoms are mild, you may not need any treatment at all. However, if the symptoms are causing discomfort or damage to your body, your doctor may prescribe treatment, including: Corticosteroid medications to help reduce inflammation. The drugs could be taken orally (by pill) or applied directly to the part of the body affected most, such as with topical creams to spots on the skin or eye drops. Nonsteroidal anti-inflammatory drugs (NSAIDs). These oral medications also help reduce inflammation in the body. Tumor necrosis factor-alpha inhibitors. This class of medication is usually used to treat other inflammatory diseases like rheumatoid arthritis. Physicians may prescribe it “off label” since it has not received FDA approval as a sarcoidosis treatment. What can I do to help myself if I have sarcoidosis? Sarcoidosis can cause severe, disabling symptoms for some and it can have only minimal impact on others. Lifestyle habits could play a role in how severe your symptoms are. Doctors recommend that people with sarcoidosis follow the usual recommendations for a healthier lifestyle, such as: Eating a healthy diet Maintaining a healthy weight Not smoking Getting enough sleep Exercising regularly It is important that you work with your doctor and you follow your treatment plan as prescribed. If you are having difficulty doing this, speak with your doctor about other options or possible adaptations to your treatment. What causes sarcoidosis flare-ups? Some people see their sarcoidosis symptoms come and go. At times, the symptoms seem to flare up, causing more problems than usual. Just as doctors don’t know what causes sarcoidosis in the first place, they don’t know what causes flare-ups. But, anything that stresses your body could cause symptoms to worsen, so self-care is important if you have a disease like sarcoidosis. What is the outlook or prognosis for someone who has sarcoidosis? It is hard to tell what the prognosis is for someone with sarcoidosis. Some people see their symptoms go away on their own; others continue to have symptoms but they don’t get any better or worse; while others see their symptoms worsen over time. Between 1 and 5% of people with the disease die from sarcoidosis-related complications, most often of the heart and lungs. People at highest risk of dying from sarcoidosis complications are those of African-American descent, women, and those 55 and older.