Black people in the United States are more likely to develop lupus, have more severe disease, and have a higher risk of death. Recognizing symptoms and finding expert care can help improve outcomes.

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Lupus is a chronic autoimmune disease in which your body’s immune system attacks its own healthy cells and tissues, causing inflammation. This inflammation can lead to flare-ups that affect the skin, joints, kidneys, and other organs.

For Black, African American, and other people of color with dark skin, their lupus may look much different from people with light skin. These groups can also experience discrepancies in care due to health disparities.

Here’s a look at how this chronic disease affects people of African American heritage.

A rash is one of the most common symptoms of lupus. It typically appears on the face, spreading across the nose and cheeks, but it can appear anywhere on the body.

People with dark skin are more likely to develop discoid lupus erythematosus, the most common type of skin lupus. This type of lupus causes raised, disc-shaped patches that feel thick and scaly on the scalp, face, and other areas of the body. When these patches fade, dark spots and permanent scars can appear.

A 2021 study reveals Black people in the United States with discoid lupus are more likely to develop scarring and discoloration than those with light skin tones.

Other lupus symptoms

Besides rashes, lupus may cause other symptoms in those with the condition, including Black people, such as:

  • pain and swelling in the muscles and joints
  • fever
  • hair loss
  • mouth sores
  • sun sensitivity
  • heart, kidney, or lung problems
  • chest pain during deep breathing
  • fingers or toes turn blue or white or feel numb
  • blood clots
  • mental health conditions
  • memory problems
  • eye damage

Systemic lupus erythematosus (SLE), the most common type of lupus, is two to three times more common in Black people, according to several studies in a 2017 research review. In SLE, lupus symptoms affect multiple body systems.

According to the Centers for Disease Control and Prevention (CDC), Black and Hispanic women more often receive a lupus diagnosis at a younger age than white women.

Researchers in a 2022 study note that, in addition to receiving a higher prevalence of confirmed diagnoses, Black People in the United States with lupus have increased:

  • incidence (new diagnoses)
  • morbidity (illness)
  • disease activity
  • disability
  • mortality (death)

For example, disease progression to renal (kidney) failure is more than twice as common among Black people with lupus than white people. SLE can cause nephritis, a health condition which, if left untreated, can lead to kidney failure.

While kidney problems are common among Black people with lupus, they’re not the most common cause of death. Cardiovascular or heart disease has recently become the leading cause of early death in people across all racial and ethnic backgrounds with lupus.

Regarding race, according to a 2023 study, Black people with lupus were 7 times more likely than people of other races to experience a cardiovascular event like a heart attack or stroke over a 15-year span after an SLE diagnosis. Within the first 12 years, they were 19 times more likely to experience such an event.

A different 2023 study found that people of African American descent with lupus were also more likely to experience neuropsychiatric lupus and alopecia.

Did you know?

The genes that contribute to the development of lupus may vary in different Black populations. Per the second 2023 study previously discussed, scientists believe that Black people in the United States may experience lupus differently than Black people from the Caribbean or Africa.

Researchers have even observed differences between Sub-Saharan populations and people from elsewhere in Africa.

This suggests that where your ancestors come from may play a role in how you experience lupus symptoms and complications.

People of African ancestry living in the United States, Europe, and the Caribbean tend to have the most severe forms of lupus.

No specific test can diagnose lupus. It’s often a challenge for doctors to diagnose, as lupus symptoms can often resemble other conditions. According to the Lupus Foundation, it takes an average of 6 years to receive a lupus diagnosis after you first experience symptoms.

A delay in diagnosis could increase your risk of lupus complications.

A 2023 study reviewing Black people’s experiences with lupus identified the following potential factors for delayed diagnosis in these populations:

  • nonspecific symptoms like fatigue and pain
  • limited knowledge of family history of lupus
  • limited knowledge of signs and symptoms
  • doctors not believing patient’s assessment of pain or other symptoms

A doctor can diagnose SLE and other forms of lupus by:

  • reviewing your medical history and symptoms
  • asking about your family history of lupus or other autoimmune diseases
  • completing a physical exam
  • ordering blood and urine tests
  • ordering a biopsy to analyze a skin or kidney tissue sample

Once you receive a diagnosis, your doctor will create a treatment plan to help you manage your symptoms.

Lupus is not a curable disease, but it’s manageable with treatment. Medications that may help you manage lupus symptoms include:

Treatment is essential to improving your outcomes with lupus.

However, research from 2020 reveals that African American people are less likely to adhere to their lupus treatment plan than white people. A significant reason cited for this in the study was communication from doctors that was hurried, disrespectful, or lacked compassion.

Finding culturally competent lupus care

A 2022 narrative review reveals Black Americans face health disparities in lupus care and treatment due to:

  • being underrepresented in clinical trials
  • systemic racism
  • socioeconomic status
  • genetics
  • unequal access to specialty care in rural areas
  • lower educational levels
  • fragmented healthcare systems
  • limited rheumatology training for primary care physicians

According to a 2023 literature review, Black people with SLE may face lower quality and inconsistent medical care due to implicit bias from healthcare professionals.

There’s a need for culturally competent medical professionals for Black people in the United States living with lupus. A 2019 research article states that culturally competent medical professionals can effectively communicate with people from various cultures, improving relationships and enhancing the quality of care.

Learn more about finding medical care when you’re Black.

Most people with lupus can live long with the disease. A 2021 review notes that 76% to 89% of people with lupus in North America live for at least 10 years. It’s important to note that the studies reviewed only followed participants for 10 years and that many people with lupus live much longer.

But of all races and ethnicities, Black Americans have the highest death rates from lupus.

According to a 2019 study based on Georgia Lupus Registry data covering Fulton and DeKalb counties, Black people with lupus tend to die sooner after diagnosis and die at a younger age than White people with lupus. The average age of death in the study was 13 years younger for Black people with lupus than for white people with lupus.

In addition to race and ethnicity, the severity and intensity of flare-ups, health complications, and quality of medical care can affect your life expectancy with lupus.

Lupus disproportionately affects Black and African American people. They’re more likely to receive a diagnosis, experience complications, and die from the disease. However, culturally competent care and involvement in clinical trials can help reduce these rates.

While efforts to reduce disparities in care continue, Black people can support their care journey and help reduce flare-ups by following their treatment plan and regularly visiting with their healthcare team.