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Sarcoidosis | Mate pauku

Key points about sarcoidosis

Sarcoidosis is a rare condition that mainly affects people's lungs, although sometimes it can affect other parts of the body.
Not everyone has symptoms, but they can include a dry cough, chest pain or discomfort, tiredness, unintended weight loss and painful red lumps on the front of your legs.
The exact cause of sarcoidosis is not known but it seems to run in families. It may be that an infection triggers it in people whose genes put them at risk of getting it.
It can affect people of any age, but occurs mostly in people aged between 25 and 45 years.
It generally only lasts a few years.

Man sitting on side of bed looking unwell & tired

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The signs and symptoms of sarcoidosis vary depending on which organs are affected. Many people don't have any symptoms, others may have one or more of the following:

a persistent cough
chest pain or discomfort
tiredness
unintentional weight loss
painful red lumps (called erythema nodosum) on the front of the legs.

Most people have acute sarcoidosis, which only lasts a few years. But there's a rarer form known as chronic sarcoidosis that can need long-term treatment.

If you think you may have sarcoidosis, speak to your healthcare provider who can organise some tests for you. These may include a complete blood count, a chest X-ray and spirometry, which is a test to measure how well your lungs are working. You may need to see a hospital specialist for further tests, such as a CT scan or a biopsy (which means taking a small bit of your tissue so it can be tested in a laboratory).

For most people, sarcoidosis is usually a mild condition that gets better within 1–3 years and doesn't need any treatment. Your healthcare provider will monitor you over this time. If you have more severe symptoms, you'll usually be treated with prednisone. Sometimes you'll also need medicines that suppress your immune system (immunosuppressants).

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You may find it useful to look at some Self-management and healthy living apps.

Video: Living with and managing sarcoidosis

Prior to being diagnosed with sarcoidosis, Romaine had never heard of the disease. Her symptoms started with a dry cough, which became far worse about a year later. Unable to speak a sentence without coughing, Romaine began taking medicine to treat her sarcoidosis. Also, she began to focus on following a healthy lifestyle, including eating well and being physically active. By following her treatment plan and making lifestyle changes, Romaine is able to live a full, active life. This video may take a few moments to load.