“Because it is an invisible disease and I can appear well, there were those who questioned my illness and my many sufferings” (Patient, Austria)

Sarcoidosis affects the lungs in more than 90% of cases. The most common lung-related symptoms are cough, shortness of breath and chest pain.


"When it started about 3 years ago, I felt very tired, very tired, I had spots on my legs that hurt and itched, so I didn’t know what was happening to me.​" (Patient, UK)

About 25% of patients with sarcoidosis develop at least one skin symptom. Skin conditions may include:

  • Erythema nodosum: tender, red bumps or patches on the skin, usually found on the shins. Often accompanied by swollen and painful joints. This is the most common skin condition found in people with sarcoidosis.
  • Lupus Pernio: purple-coloured bumps form on the face e.g. on the cheeks, nose, lips and ears.
  • Other skin signs: in patients with long-term disease this may include bumps in or under the skin, rashes and scars.


Eye problems caused by sarcoidosis might include:

  • Uveitis: this is the most common eye symptom and is caused by inflammation of the middle layer of the eye (uvea). Symptoms include blurred vision and/or seeing black spots, redness and pain to the touch, light sensitivity.
  • Lacrimal gland inflammation: this is rare and occurs when the tear glands are swollen.Symptoms include dry eyes, burning or itchy eyes, overproduction of tears.
  • Glaucoma, cataracts, and blindness: these are rare but serious problems that can occur if eye symptoms go untreated.


"For me it is very important to live well the years that I have to live, whether they are 5, 10 or 20. I'm not interested in quantity, but in quality of life." (Patient, Italy)

The heart muscle can be affected by sarcoidosis. Only about 5% of patients report having any heart-related symptoms. When the heart is involved it may be called cardiac sarcoidosis.

Symptoms include:

  • irregular heartbeat
  • dizziness or fainting spells
  • shortness of breath
  • chest pain
  • swelling of the legs

Many diagnostic tests can be performed in the assessment of people suspected of cardiac sarcoidosis and include ECG (electrocardiogram). Echocardiography, and MRI imaging.

Nervous system

"Every social visit has to be planned and coordinated and has to be cancelled when I am too fatigued" (Patient, Netherlands)

Sarcoidosis may affect any part of the nervous system, such as your brain or spinal cord (neurosarcoidosis). However, this is very rare. It can present in many different ways and resembles many other neurological disorders.

Some examples are:

  • Cranial neuropathy (weakness of one side of the face)
  • Leptomeningitis (inflammation of the inner lining of the brain): common symptoms are headaches, tiredness, slowness of thinking
  • Pachymeningitis (inflammation of the outer lining of the brain): common symptoms are headaches, numbness down one side
  • Vasculitis (inflammation of blood vessels of the brain)

Small fibre neuropathy gives a sensation of burning in the feet and is common for people with neurosaroidosis.


"I have liver sarcoidosis and thanks to medication I can have a normal life." (Patient, Spain)

Granulomas are present in the liver in 50% to 80% of patients with sarcoidosis. However, patients usually do not notice symptoms related to the liver.

If symptoms do occur they may include:

  • Abdominal pain
  • Fever
  • Weight loss
  • Jaundice (yellowing of the skin)

In rare cases, liver disease can progress to hypertension in the liver (called portal hypertension) or cirrhosis (a disease causing widespread disruption of liver function).