Why does lupus look so different for different people?
May is Lupus Awareness Month and this week, we want to dedicate our newsletter to the many faces of lupus and the unique ways systemic lupus erythematosus (SLE) manifests across different communities. SLE is a disease shaped as much by race, sex, socioeconomic circumstance, and history as it is by immunology—and for certain populations, the gap between first symptoms and adequate care is wider, the disease itself is more severe, and the consequences more devastating.
SLE is three times more common, and with severe manifestations, in African American women compared to women of other races. In the American Indian and Alaska Native populations, the least-studied groups in lupus research, SLE shows high prevalence rates and severe disease manifestations comparable to those of the African American population. Whether this stems from genetic differences, social and physical environments, disparities in health care access, or some combination of these factors remains a subject of ongoing inquiry.
What is clear is the human cost: health disparities in SLE between African American patients and persons of other races have been reported since the 1960s and are correlated with measures of lower socioeconomic status. A 2002 study, the first true US population-based analysis using death certificate records, demonstrated a stark disparity in SLE mortality between African American women and Caucasian women. Additionally, a 2023 review examined disease burden through a lens that is rarely applied to autoimmune disease research: the biology of trauma. Native populations have high rates of childhood trauma, such as those catalogued in the Adverse Childhood Experiences (ACE) study, and have broad-reaching immunologic and epigenetic effects that may help explain not only why SLE is so prevalent in these communities, but also why it presents so severely. Our genetics, background, and history of trauma could all contribute to the development of lupus and its severity.
Lupus is also widely known as a disease of women, and for good reason—the female-to-male ratio in most studies falls between 4:1 and 11:1. But the experience of men with lupus is significant as well, because the data is consistent: when men develop SLE, the disease tends to be more severe. A 2025 scoping review synthesized 81 studies published between 2015 and 2024 and found a striking pattern: men with lupus had a higher proportion of nephritis, serositis, and antiphospholipid syndrome, along with greater renal and cardiovascular damage, severe infections, and higher rates of osteoporotic fractures and osteonecrosis.
Taken together, these studies tell a story about a disease that hides differently depending on who you are. It hides behind the downstream effects of poverty, trauma, and systemic neglect on immune function. It hides behind clinical patterns that differ by sex in ways that current treatment guidelines do not yet fully address. Every population deserves a lupus diagnosis that does not depend on fitting someone else's picture of the disease.
Our surveys are collecting data on patients with lupus and other autoimmune diseases. If you have lupus—regardless of your background, race, or sex—please take a few minutes to complete our Lupus Diagnostic Survey and Lupus Treatment & Care Survey. We also have surveys on family health history and financial impact. Your experience is data that can shorten the road for the patients who come after you.
