One in ten Americans — children and adults alike — live with a lung disease. While many people recognize asthma, COPD, and lung cancer, fewer are aware of sarcoidosis, a complex and often misunderstood condition that affects an estimated 175,000–200,000 people in the United States alone.
Sarcoidosis (pronounced sar-coy-doe-sis) is an inflammatory disease that causes the body’s immune system to form clusters of cells, known as granulomas, in one or more organs, most commonly the lungs. When too many granulomas develop, they can disrupt organ function, cause chronic pain, and lead to long-term damage. Over 90% of sarcoidosis patients experience lung involvement, and approximately 10% to 30% of patients with sarcoidosis develop progressive pulmonary disease.
Sarcoidosis is often called a “snowflake disease” because no two cases are exactly alike. Symptoms vary greatly between individuals and can mimic other illnesses, such as asthma, lupus, multiple sclerosis, or even cancer. This makes diagnosis difficult and often delayed. Patients may live with debilitating symptoms for years before receiving the correct diagnosis.
Common symptoms can include:
- Persistent fatigue
- Chronic cough or wheezing
- Shortness of breath
- Chest pain
- Skin rashes or discoloration
- Irregular heartbeat
- Eye inflammation or vision problems
- Numbness or weakness in limbs or face
Diagnosing sarcoidosis
Diagnosing sarcoidosis is complex. It is a disease of exclusion, meaning physicians must first rule out every other possibility. As a result, many patients face delayed diagnoses, misdiagnoses, and years without appropriate care. For Black Americans, particularly women and U.S. veterans, who are at increased risk and experience worse outcomes, these barriers are even higher. Black and African Americans are 2.5 times more likely to have sarcoidosis than white Americans.
There is no known cause or cure for sarcoidosis. Researchers believe the disease may be triggered by environmental or infectious exposures, especially among those with a genetic predisposition. Studies have linked sarcoidosis to inhaled toxins like mold, dust, smoke, and particulate matter. Veterans exposed to burn pits and first responders at Ground Zero have developed sarcoidosis at significantly higher rates.
Despite its complexity, treatment options remain limited. Most patients are prescribed corticosteroids to reduce inflammation, but these drugs come with long-term risks like osteoporosis, diabetes, and mood changes. Many patients find themselves in a cycle of tapering and relapse, with few alternatives.
Here’s how patients and caregivers can advocate for better health:
- Track your symptoms and bring documentation to appointments.
- Ask questions about environmental exposures and organ-specific effects.
- Seek a second opinion or ask for a referral to a specialist if your concerns are dismissed.
- Find support through organizations like the Foundation for Sarcoidosis Research (FSR), which offers tools to learn and connect with experts and other patients.
- Push for change by sharing your story and raising awareness in your community.
At FSR, we are committed to changing this reality. We are accelerating research, advocating for access to care, and ensuring that no patient or caregiver feels alone in their journey. Learn more at www.stopsarcoidosis.org.
