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What is sarcoidosis?

Sarcoidosis is a rare disease in which inflammation arises spontaneously in different organs and tissues of the human body. During an inflammatory reaction the body produces a great amount of white blood cells which, at one point, accumulate in the body.  These accumulations of white bloods cells are called "granulomas".

Granulomas can occur in for example:

  • Lungs (may be progressive)
  • Lymph nodes
  • Skin
  • Eyes
  • Joints
  • Brain (neurosarcoidosis)
  • Heart (cardiac sarcoidosis)

In some cases the patient does not have symptoms and the granulomas disappear spontaneously during the course of the disease ]Sometimes,  the granulomas stay or even multiply. In more severe cases, this  results in scar tissue formation.  This could lead to injury in one or more organs, which could potentially be dangerous. In the case of persisting disease, the patient can experiences a prolonged sensation of discomfort or illness. 
Sarcoidosis is a highly complex disease and its cause is not yet known. We are closely involved in international scientific research on sarcoidosis .
Sarcoidosis is a rare disease  and can affect both men and women. Although the disease can occur at any given age, it has mostly been diagnosed with patients between the ages of 20 to 40 years. Around 2.000 new patients are diagnosed with sarcoidosis annually in the Netherlands.. It has been estimated that about 40 per 100.000 persons living in the Netherlands have  sarcoidosis. However, this is likely an underestimation,  as around 30 to 60 percent of the patients don't experience any discomfort or illness and thus don't get diagnosed. In our center we receive both new patients as well as patients that (regularly) come for a check-up. We have more than 1.700 appointments annually concerning sarcoidosis.

The symptoms can differ per patient. The symptoms a patient might experience depends on the organ or tissue involved. The lack of energy is a distinctive complaint seen with many patients. Other, more general  complaints are headache, weight loss, dizziness, fever and depression may occur.

Furthermore, patients could experience the following symptoms:

  • Shortness of breath (Dyspnea)
  • Pain in the joints and muscles, stiffness
  • Blurry vision, loss of eyesight, burning/ dry or sore eyes
  • Skin complaints (such as rashes)
  • Painful swellings in the legs
  • Couching or sputum
  • chest pain, irregular heartbeats
  • Neurological complaints (nerve pain, loss of sensation or strength)

Acute- and chronic sarcoidosis
Sarcoidosis can have an acute onset or come as a gradual process. With acute sarcoidosis complaints arise suddenly, for example with purple spots on the skin ("called erythema nodosum"). This is often combined with painful and swollen joints, fever, tiredness and swollen lymph nodes between the lungs. Patients could suddenly feel fairly ill. As the disease progresses,  symptoms disappear spontaneously. In most cases (80%) the symptoms disappear within a year. This acute form of sarcoidosis also goes by the name Löfgren syndrome.

Sarcoidosis with a more gradual disease course may show less symptoms at first, however lasts longer. If the symptoms persist for a longer period of time it is called chronic sarcoidosis. The complaints can worsen and flare up during disease course.