Lupus may be more common than you think it is. Here are some of the most interesting and important statistics and facts about lupus so you can better understand this complex autoimmune disease.

Key Lupus Statistics You Should Know

It can be hard to know exactly how many people have any medical condition because some cases will go undiagnosed. However, researchers believe that at least 1.5 million people in the United States and 5 million people around the world have some form of lupus. In the United States, about 16,000 cases of lupus are diagnosed every year.

Because there is currently no single test to diagnose lupus, it can be a hard condition to confirm. It can take a while to get diagnosed, and some people may be missed entirely. That’s why these numbers are approximations. There may actually be more people living with lupus who’ve never been diagnosed.

Lupus and Gender

Of all of the people living with lupus, roughly 90 percent are women, according to the Lupus Foundation of America. While men can get lupus, too, it’s not nearly as common.

Recent research offers more insight into the gender disparity in lupus. A study in mice looked at how a process called “X chromosome inactivation” could affect lupus risk in women. According to the Lupus Research Alliance, since males usually have only one X chromosome, compared to two in females, their bodies don’t have this extra process. More research is needed to understand why females are so much more likely to develop lupus.

Lupus, Genetics, and Race

Your race and genetic background may also make you more likely to develop lupus.

According to the Lupus Foundation of America, lupus is significantly more common among Hispanic/Latina, Native American, Alaska Native, Pacific Islander (including native Hawaiians), African American, and Asian American women. It’s somewhere between two and three times more common in these populations than in white populations.

According to the National Institute of Diabetes and Digestive and Kidney Diseases and the Lupus Foundation of America, Black women are particularly impacted by lupus. The numbers vary considerably depending on the source — estimates suggest that between 1 in 250 and 1 in 537 Black women in the U.S. will be diagnosed with lupus during their lives.

While your genes don’t cause lupus directly, they can make it more likely that you’ll develop it. A number of genes are connected to lupus. About 20 percent of people with lupus have a close family member (like a parent or sibling) who either already has the diagnosis of lupus or who will get it during their lifetime. About 5 percent of children born to mothers with lupus will develop lupus themselves.

Lupus and Age

Most people who develop lupus do so when they’re between the ages of 15 and 44.

For the most common subtype of lupus (more on these below), about 65 percent of people are diagnosed between ages 16 and 55. About 20 percent show symptoms before they’re 16 years old, and 15 percent show symptoms after they’re 55.

People diagnosed with lupus when they’re older share some characteristics. They’re more likely to be white and less likely to be female, according to the Lupus Foundation of America. They’re also more likely to have mouth ulcers and to have other autoimmune conditions (like Raynaud’s syndrome and rheumatoid arthritis) than other people with lupus.

Lupus Subtypes

There are four different types of lupus.

The most common one, and the one that most people mean when they say lupus, is systemic lupus erythematosus, or SLE. About 70 percent of people diagnosed with lupus have this type. Roughly half of people with this type of lupus see it affect one of their major organs, like their heart, brain, lungs, kidneys, and liver. In the remaining cases, lupus may primarily affect other parts of the body, such as the skin, joints, or blood cells, without affecting major organs.

About 10 percent of people living with lupus have drug-induced lupus. This condition’s symptoms are similar to those of SLE, but it is caused by taking certain medications. Most of the time, symptoms stop when a person stops taking the medication that’s causing it.

About 10 percent of people diagnosed with lupus have cutaneous lupus. People with cutaneous lupus do not usually experience internal organ involvement, although in some cases, skin lupus may eventually develop into systemic lupus.

Neonatal lupus is a rare form of lupus. According to the Lupus Foundation of America, if a mother has lupus and their antibodies affect the baby, the child may be born with lupus symptoms. These usually go away within six months of birth, once the baby isn’t exposed to those antibodies anymore.

Lupus Nephritis

Lupus nephritis happens when lupus causes inflammation in your kidneys. The inflamed kidneys then struggle to manage fluid and waste levels in the body.

About one-third of people already have symptoms of lupus nephritis when they’re diagnosed with SLE. Overall, somewhere between 50 percent and 60 percent of people living with SLE will end up dealing with lupus nephritis.

While lupus nephritis is serious, there are treatments that can help prevent or postpone its most serious complications.

Lupus and Mortality Rate

Complications from lupus can affect someone’s lifespan: Somewhere between 10 percent and 15 percent of people with lupus may die earlier than they otherwise would have. In Black and Hispanic women, it’s somewhere between the fifth and ninth leading cause of death, depending on their age (excluding injuries), according to the Lupus Foundation of America.

Talk to your rheumatologist about the best way to manage your lupus and any potential complications, like cardiovascular disease (heart disease). You can improve your well-being with treatments for lupus and other health problems and through lifestyle changes.

Lupus and Money

People living with lupus may face a financial burden of up to $50,000 per year. This includes both what they pay in medical costs and what they lose when they can’t work as much or at all. For people living with lupus nephritis or other complications, this number may be even higher.

Fifty-five percent of people living with the condition have lost all or part of their income due to their illness. They may be temporarily or permanently disabled by symptoms related to lupus.

If you are in this situation, know that you have options. Some people with lupus receive disability benefits, and many have health insurance through programs like Medicare and Medicaid. You can talk to someone on your rheumatology team or to a social worker to find out more about these programs.

Talk With Others Who Understand

MyLupusTeam is the social network for people with lupus and their loved ones. On MyLupusTeam, members come together to ask questions, give advice, and share their stories with others who understand life with lupus.

Do you know any other interesting statistics about lupus? Which of the statistics in this article are the most important to you? Share your experience in the comments below, or start a conversation by posting on your Activities page.