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Race and other factors, including sex and age, can affect the health outcomes of people living with systemic lupus erythematosus (SLE). Often simply referred to as lupus, SLE is a type of autoimmune disease that disproportionately (unequally) affects people of color and women, according to the Lupus Foundation of America.
In this article, we’ll take a close look at the research surrounding lupus and race and other risk factors for developing lupus. We’ll also explore how disparities (differences in resources or treatment) in race affect SLE treatment and severity. Keep reading to find out what you can do to advocate for yourself as a person living with SLE.
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Those familiar with SLE may know that lupus is more common in certain racial groups. A person’s race has an impact on their risk of developing the disease. It may also affect their experience with lupus and treatment in several ways.
According to the Manhattan Lupus Surveillance Program (MLSP), non-Hispanic Black women have the highest rate of SLE, at roughly three times that of non-Hispanic white women. Lupus rates are about twice as high in Hispanic women and 1.4 times higher in Asian women than in white women.
SLE is also more prevalent among non-Hispanic Black, Hispanic, and Asian men than among white men, the study authors reported. According to the researchers’ findings, compared to the condition’s prevalence (how common it is) among white men, the prevalence of SLE is roughly:
Lupus in Black women is more likely to result in severe complications compared with white women, according to the Lupus Foundation of America. Complications include lupus nephritis (lupus-related kidney disease), end-stage renal disease (kidney failure), and neurological disease.
Black people with lupus are more likely to die from the disease than white people, according to the Centers for Disease Control and Prevention (CDC). Among people who die of lupus, the average age of death is significantly younger for Black people than for white people.
Other racial and ethnic groups are also disproportionately affected by lupus complications. A 2019 study published in Arthritis Care & Research found that African American, Asian/Pacific Islander, and Hispanic people with lupus had higher rates of kidney complications, neurological complications, and blood disorders, compared with white people living with the condition. In the MLSP data, the prevalence of lupus nephritis was as high as 53.2 percent in Asian people, 50.7 percent in Black people, and 49.4 percent in Hispanic people — compared with 25.4 percent among white people.
Although the causes of lupus aren’t fully understood, higher prevalence and poorer health outcomes among non-white people compared with white people with SLE are related to social and societal factors, according to the American Journal of Epidemiology. Research suggests that social factors (such as poverty and discrimination) can heavily impact disease progression.
Inequalities in how many people get SLE and how severely people experience the disease are worsened by implicit bias (an unconscious negative attitude against a particular social group) and unfair medical treatment, according to the Annual Review of Public Health.
Researchers have reported findings such as these:
Race is only one factor that may raise your risk of developing lupus. There are other demographic factors to know.
According to the Lupus Foundation of America, lupus is much more common in women than in men, with rates of SLE among women about nine times higher than those among men. Scientists still aren’t sure why this happens but suggest that it has to do with genetic and hormonal differences between men and women.
According to the Lupus Foundation of America, most people with lupus first experience symptoms and are diagnosed between ages 15 and 44. Lupus symptoms and progression also vary based on age. They can also vary based on when the condition first developed.
People who get lupus at an older age may experience lupus differently than people who develop it when they’re younger. Some people diagnosed with lupus after age 50 may experience more severe symptoms, which can lead to more damage to the body and possibly even higher mortality rates. Specific outcomes for people diagnosed later in life depend on how fast they get diagnosed, what other conditions they live with in addition to lupus, and how easy it is for them to get the care they need.
Research has identified patterns related to age, sex, and race in people with lupus. Lupus tends to be diagnosed at a younger age in Black women than in white women, according to the Lupus Foundation of America. For example, lupus rates are three times higher in African American women than in white women, especially among those ages 30 to 39. One study published in the journal Lupus found that the average age of lupus diagnosis was six years younger in African Americans than in white people.
According to the journal Arthritis & Rheumatology, there’s some evidence that genetic factors may play a role in earlier SLE onset among African Americans. However, the precise reason for this difference isn’t well understood. Some researchers believe that environmental factors also play an important role.
Racial disparities in public healthcare can have a significant impact on the diagnosis, treatment, and management of SLE. But through research, advocacy, and education, we can begin to improve the quality of life for people of color living with lupus.
If you’re living with lupus, you can take some steps to advocate for yourself, from diagnosis to treatment and beyond.
SLE complications like kidney disease disproportionately affect people of color, so it’s important to be familiar with the symptoms of these other conditions. For example, symptoms of lupus nephritis include foamy urine, blood in the urine, and swelling in the hands, feet, and face.
Other lupus complications include heart attack and stroke. Cardiovascular disease (heart and blood vessel disease) is one of the top causes of death in individuals with lupus across racial groups. Talk to your doctor about the complications of lupus, the symptoms of these conditions, and any steps you can take to care for your health.
Research suggests that people of color often receive a lower quality of care from healthcare providers. This is often because of racial discrimination and bias. Be aware of the possibility of discriminatory treatment. Be ready to ask for a referral, tell medical leadership about your concerns, or look for a new provider if you’re being treated poorly. Seek out culturally competent doctors and specialists who understand and address your unique needs.
Planning ahead for appointments can help you make the most of your time with your doctor. Write down your questions. Then, reflect on how lupus affects your life. Speaking up about your concerns regarding symptoms, treatments, or quality of life — even if your healthcare provider doesn’t directly ask about a specific issue — can help ensure your needs are met.
Your rheumatologist will ask about your family history, so check with family members to learn if anyone else has been diagnosed with SLE or has experienced symptoms, such as joint pain, rashes, and oral or nasal sores. Be ready to follow up if you need additional help.
Building a strong support system of people with lupus can help you be your best health advocate. In addition to connecting with people on MyLupusTeam, look for support groups in your area so you can ask questions about others’ experiences and share your own. Doing so may help you connect with resources you weren’t aware of before. It can also give you strength during hard times with your illness.
On MyLupusTeam, people share their experiences with lupus, get advice, and find support from others who understand.
What do you wish people knew about race and lupus? Let others know in the comments below.
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