Who gets lupus more often, women or men? And does your race or ethnicity affect your odds of getting the disease?
The field of epidemiology can help us answer these questions. It’s a branch of science that looks at how often diseases affect different groups of people and why. Medical experts can then use this information to plan and assess ways to prevent or manage diseases.
About 1.5 million Americans and 5 million people worldwide have lupus, according to the Lupus Foundation of America. Experts aren’t sure what causes this chronic disease, but many of them think that genes, hormones, and triggers in your environment play roles.
Here’s a closer look at who lupus tends to affect and why.
Is Lupus an Inherited ‘Family Disease’?
Lupus and other autoimmune disorders tend to run in families. It’s possible to inherit mutated genes that raise your chances of getting lupus. Not everyone with the disease has such genes, though. And even if you do, it doesn’t guarantee that you’ll get lupus.
Researchers have spotted over 50 genes that are more common in people with lupus than in those who don’t have the disease.
Even though someone’s genetics can make them more likely to get lupus, most people with the condition don’t have a known relative with the disease. Some of their family members are likely to have other autoimmune disorders, though.
Why Is Lupus More Common in Women?
Anyone can get lupus, but 9 out of 10 people with the disease are women. Most of them get diagnosed with it between the ages of 15 and 44.
Experts don’t know exactly why lupus affects more women than men, but they think differences in hormones might play a role. Women make much more of the sex hormone estrogen than men do, so researchers have studied the connection between estrogen and lupus.
Many women with lupus have more symptoms before their menstrual period and during pregnancy, which are times when the body makes more estrogen. This leads some researchers to think that the hormone somehow contributes to how bad a woman’s lupus is. But this link doesn’t prove that estrogen or any other hormone causes lupus.
So researchers continue to look into why women are more likely than men to get lupus and other types of autoimmune disorders.
More research is needed on how lupus affects transgender women and men, including how hormonal treatments they might take could impact the disease. But most lupus treatments are the same, no matter a person’s sex or gender.
How Are Race and Ethnicity Linked to Lupus Risk?
Lupus affects more people in racial and ethnic minority groups in the U.S.
Research shows that compared to white women, lupus is more common in women who are:
- African American
- African Caribbean
- Hispanic or Latina
- Asian American
- Native American
- Alaska Native
- Pacific Islander
African American women in particular seem to have a higher risk of getting lupus. As many as 1 in 250 will develop the disease.
African American and Hispanic women tend to get lupus at a younger age and have more serious symptoms than women of other races or ethnicities. Again, experts think genes could be involved.
It’s not clear why lupus is more common among people in racial and ethnic minority groups. Genes may play a role, but genetics alone can’t explain it, says Christie Bartels, MD. She’s the head of the Division of Rheumatology at the University of Wisconsin School of Medicine and Public Health and a member of the medical-scientific advisory council at the Lupus Foundation of America.
In the U.S., people in racial and ethnic minority groups also face higher odds of having worse health outcomes with lupus. For instance, they’re more likely to get serious health problems after a doctor diagnoses them with the disease.
What’s more, one study in California found that women of Asian descent with lupus were four times more likely to die early than women of Asian descent who didn’t have lupus. Hispanic and Latina women with lupus were six times more likely to die early compared to Hispanic and Latina women who didn’t have the disease. Another study found that among Black or Hispanic females ages 15 to 24, lupus ranked fifth as a chronic disease cause of death during the years 2000-2015.
There could be a number of reasons why lupus tends to take a worse toll on people in racial and ethnic minority groups. Bartels says one or more of factors like these can play a role:
- Less access to doctors and lupus specialists (like rheumatologists)
- Language or educational barriers
- Social stressors that may be triggers for the disease
- Structural racism within society and the health care system
The Lupus Foundation of America says that communities of color often face barriers that lead to worse health outcomes, like lower-than-average incomes and rates of health insurance coverage. If you need financial help managing lupus, the foundation offers this list of resources.
If you think that your lupus doctor may hold a bias that affects your health care, get a second opinion from another doctor.
Lupus self-management tools and resources in Spanish (like the nonprofit site Hablemos de Lupus) can also help.