Sarcoidosis overview

Overview

Sarcoidosis (sar-koy-DOH-sis) is a condition where tiny clumps of inflammatory cells, called granulomas, form in different parts of the body. These clumps most often appear in the lungs and lymph nodes, but they can also affect the skin, eyes, and other organs. In many people, sarcoidosis goes away on its own, but for some it can last a long time and need treatment.

Sarcoidosis is not very common. It affects about 1 in 5,000 to 1 in 10,000 people worldwide. It is more common in certain populations, such as people of African or Scandinavian descent.

Sarcoidosis can affect people of any age, but it most often starts between ages 20 and 40. It is slightly more common in women than in men. People with a family history of sarcoidosis have a higher chance of getting it.

Symptoms

Common symptoms

• Persistent cough
• Shortness of breath
• Chest pain or discomfort
• Tiredness (fatigue) that does not go away
• Feeling generally unwell (like having the flu)
• Swollen lymph nodes (glands) in the neck, armpits, or groin
• Red or painful bumps on the skin, often on the shins or arms
• Joint pain or swelling
• Dry eyes or blurred vision

Symptoms in children

• Sarcoidosis in children is rare, but symptoms can include a rash, joint pain, and eye redness. Children may also have cough, fever, and tiredness.

Symptoms in older adults

• In older adults, sarcoidosis may present with more gradual symptoms like persistent cough, shortness of breath, and weight loss. Skin rashes and eye problems are also common.

Causes

Main causes

• The exact cause of sarcoidosis is not known. It is thought to be an overreaction of the immune system, possibly triggered by something in the environment — like a virus, bacteria, or dust. The immune system forms granulomas to try to fight the trigger, but the inflammation continues even after the trigger is gone.

Risk factors

• Family history of sarcoidosis
• Being of African, Scandinavian, or Irish descent
• Age between 20 and 40
• Gender (slightly more common in women)
• Exposure to certain environmental triggers, such as mold, dust, or chemicals (this is still being studied)

When to see a doctor

See a doctor urgently if:

• If you have sudden chest pain, trouble breathing, or cough up blood, call your local emergency number immediately.
• If you have sudden vision changes or severe eye pain, seek urgent care.

Book a routine appointment if:

• If you have a cough, shortness of breath, or tiredness that lasts more than a few weeks, see your doctor.
• If you notice new skin lumps or a red rash that does not go away.
• If you have swollen joints or painful nodules on your legs.

Diagnosis

Doctors diagnose sarcoidosis by looking at your symptoms, doing a physical exam, and using tests to check for inflammation and granulomas. There is no single test for sarcoidosis. Your doctor will rule out other conditions that can cause similar symptoms, such as infections or autoimmune diseases.

Tests that may be done

• Chest X-ray or CT scan to see if there are granulomas in your lungs or lymph nodes.
• Blood tests to check for inflammation and see how your organs are working.
• Lung function tests (spirometry) to measure how well your lungs work.
• Biopsy — taking a small sample of tissue from a lymph node, lung, or skin to look for granulomas under a microscope.
• Eye exam to check for inflammation in your eyes.

What to expect at your appointment

The process of being diagnosed can take some time because symptoms are similar to many other conditions. Your doctor may refer you to a specialist, such as a lung doctor (pulmonologist) or a skin doctor (dermatologist). Be patient and keep your appointments. If you are diagnosed, your healthcare team will help you understand the next steps.

Treatment

Not everyone with sarcoidosis needs treatment. Many people get better on their own within 1–2 years. If symptoms are mild and not getting worse, doctors may recommend watchful waiting. If symptoms are more severe or affecting vital organs like the lungs, heart, or eyes, treatment can help reduce inflammation and control symptoms.

Self-care at home

• Get plenty of rest and listen to your body — fatigue is common.
• Avoid smoking and secondhand smoke, which can make lung symptoms worse.
• Protect your skin from the sun if you have skin lesions — use sunscreen and cover up.
• Stay hydrated and eat a balanced diet to support your immune system.
• Manage stress with relaxation techniques like deep breathing or gentle exercise.

Medical treatments

If treatment is needed, doctors usually start with medications that reduce inflammation, such as corticosteroids. These can be given as pills, inhaled sprays, or creams depending on which part of the body is affected. For people who cannot take corticosteroids or need stronger treatment, other medications that calm the immune system may be used. Your doctor will choose the best option based on your symptoms, the organs involved, and your overall health.

When is surgery considered?

Surgery is rarely needed for sarcoidosis. In very rare cases, if granulomas cause scarring in the lungs (pulmonary fibrosis) and other treatments do not work, a lung transplant may be considered. This is a major decision and only done for severe disease.

Living with this condition

Living with sarcoidosis can be challenging, especially during flare-ups when symptoms are worse. Most people can still work, go to school, and enjoy activities. It helps to pace yourself and avoid overdoing things. Keep a symptom diary to share with your doctor. Join a support group to connect with others who understand what you are going through.

Lifestyle tips

• Get regular, gentle exercise like walking or swimming — it can help with fatigue and joint pain.
• Eat a heart-healthy diet rich in fruits, vegetables, whole grains, and lean protein.
• Avoid smoking and limit alcohol.
• Get enough sleep — aim for 7–9 hours per night.
• Learn to manage stress through hobbies, meditation, or talking to a counselor.

Diet and exercise

There is no special diet for sarcoidosis, but eating well can help your body stay strong. Some people find that cutting back on foods high in calcium (like dairy) can help if they have high calcium levels from sarcoidosis — talk to your doctor. Gentle exercise like stretching, yoga, or walking can improve your energy and mood. If you feel short of breath, take breaks and don't push yourself too hard.

Mental health and emotional wellbeing

Living with a chronic condition can be stressful and may lead to feelings of anxiety or depression. It is normal to feel worried or frustrated at times. Talk to your doctor about how you are feeling — they can help you find support, such as counseling or medication if needed. You are not alone, and help is available.

Prevention

There is no known way to prevent sarcoidosis because the cause is not fully understood. You cannot catch it from someone else, and there is no vaccine. The best thing you can do is to stay healthy overall and avoid things that might trigger your immune system, such as smoking or exposure to certain chemicals if you know you are sensitive.

Screening programmes

There is no routine screening test for sarcoidosis. Most cases are found when people see a doctor for symptoms. If you have a family history, you may want to be aware of symptoms but routine testing is not recommended.

Complications

If left untreated

• Permanent scarring in the lungs (pulmonary fibrosis) — this can make it hard to breathe over time.
• Eye inflammation (uveitis) that can damage vision if not treated.
• Kidney stones or kidney damage from high calcium levels.
• Heart problems, such as abnormal heart rhythms or inflammation of the heart muscle.
• Neurological symptoms, such as nerve damage or seizures (rare).

Long-term outlook

The outlook for sarcoidosis is generally good. Many people improve without treatment, and about two-thirds of people get better within a few years. For some, the condition may last longer and require ongoing care. Treatment can help control symptoms and prevent complications. Even if the disease does not go away completely, most people with sarcoidosis lead full and active lives.

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