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Living with Sarcoidosis

An inflammatory disease in which tiny lumps of cells form in organs, most often in the lungs and lymph nodes.

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Understanding Sarcoidosis

Sarcoidosis is an inflammatory disease in which tiny lumps of cells called granulomas grow in the body.

If granulomas clump together in an organ, they can change how the organ works and, over time, cause permanent scarring (fibrosis). They can form almost anywhere, but most often in the lungs and lymph nodes. Symptoms depend on where they are and how severe the condition is.

Signs & symptoms

Symptoms vary from person to person. GARD lists these among the most common:

  • Cough
  • Shortness of breath
  • Chest pain
  • Fatigue and fever
  • Tender red lumps on the skin (erythema nodosum)
  • Eye inflammation (uveitis)

Not everyone has every symptom. GARD's list comes from the Human Phenotype Ontology.

Diagnosis

  1. Talk with your doctor

    Share the symptoms you've noticed, when they started and your family health history. Notes and photos can help.

  2. See a specialist

    Specialists who may be involved include autoimmune and inflammatory disease specialists, brain and nervous system specialists, eye disease specialists and genetic specialists.

  3. Consider genetic testing

    Changes in HLA-DRB1 are linked to this condition. Genetic testing and counseling can help confirm a diagnosis and explain what it means for your family.

  4. Connect with expert centers

    Autoimmune Association, Foundation for Sarcoidosis Research and Global Autoimmune Institute may keep lists of experts for this condition.

Care & treatment

Care team
autoimmune and inflammatory disease specialists (rheumatologists); Brain and nervous system specialists (neurologists); Eye disease specialists (ophthalmologists); Genetic specialists (geneticists)
Expert care
Expert lists: Autoimmune Association, Foundation for Sarcoidosis Research, Global Autoimmune Institute
Treatment
GARD doesn't list specific treatments for this condition. Your care team will tailor care to your symptoms.
Research
Clinical trials and observational studies may be options. See the research section below.

General information, not medical advice. Your care team makes the decisions.

Everyday life

Living with a rare condition is easier with support.

  • Connect with Autoimmune Association and other patient organizations
  • Keep notes on symptoms, changes and questions for appointments
  • Ask about patient registries that help research
  • Look into financial aid and travel resources for care visits
Bring these questions to your next doctor visit
Which organs are affected, and how will they be monitored?
What treatment options are available?
Should I see an eye specialist?

Quick facts

Symptoms usually starta variety of ages
GenesHLA-DRB1

GARD says the exact cause is poorly understood. It lists the HLA-DRB1 gene.

GeneticRespiratoryNeurologicalKidneyEndocrine

Also known as: benign lymphogranulomatosis of schaumann; besnier-boeck-schaumann disease; besnier-boeck-schaumann syndrome; boeck sarcoid; boeck's sarcoid; boeck's sarcoidosis

Patient organizations

Source: NIH GARD · SarcoidosisGARD ID 7607 · GARD page updated September 2026 · Plain-language summary by Know Rare; editorial review pending. General information, not medical advice.

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Explore research for Sarcoidosis

Explore actively recruiting Sarcoidosis studies with HealthSpark.

HealthSpark

Find actively recruiting studies for Sarcoidosis with HealthSpark. Share your city to explore research near you.

  • Recruiting studies from ClinicalTrials.gov
  • Share your city to look for research near you
  • Eligibility is confirmed by the study team

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Powered by HealthSpark, our AI chat helper · Study information from ClinicalTrials.gov · Eligibility is confirmed by the study team.

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