Sarcoidosis: What Black Americans Need to Know

In the United States, sarcoidosis affects four Black Americans for every one White American diagnosed. Black patients, particularly Black women, experience more severe disease, more multi-organ involvement, higher hospitalization rates, and mortality. Factors such as genetics, environmental toxins, socioeconomic conditions, and unconscious bias contribute to worsening outcomes in sarcoidosis (Hena, 2020).

What is sarcoidosis?

Sarcoidosis is an inflammatory condition in which abnormal immune cells cluster together to form lumps called granulomas. Granulomas form when the immune system overreacts to environmental triggers, such as specific bacteria, mold, and mildew. Scientists believe that some individuals have a genetic predisposition to the disease.

Granulomas primarily affect the lungs and lymph nodes but can also involve other areas, such as the skin, liver, heart, and even the brain, and can interfere with their normal function (Sah, 2026).

Understanding Sarcoidosis Incidence and Prevalence

Researchers have reported higher rates of sarcoidosis among Black patients since the 1960s. A 2009-2013 study confirmed that incidence and prevalence rates were 17.8 and 141.4 per 100,000 for Black patients, versus 8.1 and 49.8 for White patients. Black women aged 30-39 showed the highest incidence, and Blacks are affected by the disease approximately a decade earlier than Whites. These persistent differences suggest genetic involvement (Hena, 2020).

Sarcoidosis is in our Genes

Genetic studies suggest Black Americans are more likely to develop sarcoidosis due to specific immune system genes, such as human leukocyte antigen (HLA) on chromosome 6. On the other hand, the BTNL2 gene is linked to sarcoidosis in White populations. Along with genetics, environmental factors have also been linked to the condition (Hena, 2020).​

Environment - A Significant Impact

Many studies suggest that exposure to bacteria or viruses may cause sarcoidosis. However, science has also discovered several non-infectious environmental risks that can trigger or worsen the disease. These include inhaling metal dust, living or working in damp areas with mold or mildew, and exposure to pesticides. Exposure to smoke or fumes from burning materials, as well as other airborne pollutants, has also been associated with sarcoidosis.

Other environmental risks include working in certain occupations, such as firefighting, and living in regions with common environmental challenges, such as South Carolina (Judson, 2020).

Sarcoidosis Presentation and Symptoms

Many people with sarcoidosis show no obvious signs, and because sarcoidosis can affect many organs, the symptoms often vary. The condition can be mild at first, worsen over time, or have a sudden onset and disappear quickly (Mayo Clinic, 2020). 

General

Common symptoms can include:

• Fatigue

• Depression

• Swollen lymph nodes

• Weight loss

• Fever

• Night sweats

  
  

Lungs

In 90% of cases, sarcoidosis affects the lungs (Foundation for Sarcoidosis Research, n.d.). Lung symptoms include: 

• Dry cough

• Trouble breathing, wheezing, or pain with breathing

• Chest pain, tightness, or discomfort

  
  

Skin

When sarcoidosis begins to affect the skin, it often signals the progression of the disease. Lupus pernio is a skin condition characterized by reddish-purple nodules on the face. The nodules form on the nose, lips, ears, and cheeks. Lupus pernio is seen most frequently in black females and can cause disfiguring damage to facial cartilage and bone (Wanat & Rosenbach, 2015).

Sarcoidosis symptoms in other parts of the body

• Pain and swelling in the joints

• Red and dry eyes

• Heart palpitations or an irregular heartbeat

• Brain and nervous system problems, such as:

  • Bell’s palsy

  • Weakness, numbness, tingling, and/or pain in the face, arms, and/or legs

  • Headaches

  • Seizures

Barriers to Sarcoidosis Diagnosis and Treatment

The myriad of ways that sarcoidosis shows up in the body makes it challenging for healthcare providers to diagnose and treat the disease. Studies have also shown that Black patients who lack private insurance and have a low income face more difficulty accessing appropriate sarcoidosis care. Furthermore, unconscious bias may influence healthcare providers to ignore sarcoidosis symptoms in Black patients until the condition worsens. This discriminatory belief causes medical distrust, deepening systemic racism. These obstacles can delay sarcoidosis diagnosis and treatment in Black patients, leading to more severe disease (Hena, 2020).

Why this Matters for Black Americans

In the United States, African Americans are at a higher risk of developing sarcoidosis. The disease affects Blacks more aggressively, and data show that Blacks are hospitalized for sarcoidosis more frequently and they die at an increased rate compared to whites patients, 12 times higher. Black Americans also face a diagnosis challenge as symptoms of the disease vary, which can lead to delays in prognosis and treatment (Hena, 2020).

Take Aways

Healthcare systems and communities need to address the health inequality in sarcoidosis. People living with sarcoidosis need improved support, care, and more access to medical resources. Awareness about the role of genetics, the environment, poverty, and unconscious bias can help close health disparity gaps and empower Black communities to demand change.

References

Hena, K. (2020, September 15). Sarcoidosis Epidemiology: Race Matters. PMC PubMed Central. https://pmc.ncbi.nlm.nih.gov/articles/PMC7522309/

Judson, M. (2020, June). Environmental Risk Factors for Sarcoidosis. PMC PubMed Central; Frontiers in Immunology. https://pmc.ncbi.nlm.nih.gov/articles/PMC7333358/

Mayo Clinic. (2019, January 30). Sarcoidosis - Symptoms and causes. Mayo Clinic. https://www.mayoclinic.org/diseases-conditions/sarcoidosis/symptoms-causes/syc-20350358

Sarcoidosis, What is it? (n.d.). Foundation for Sarcoidosis Research. https://www.stopsarcoidosis.org/what-is-sarcoidosis/

Wanat, K., & Rosenbach, M. (2015, December). Cutaneous Sarcoidosis. Science Direct. https://www.sciencedirect.com/science/article/abs/pii/S0272523123000734

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