May 21, 2026 By Kristin Emery 5 min read

Did you know an estimated one-and-a-half to two million Americans have some form of lupus?

Many of them go undiagnosed as symptoms vary and can easily be confused with other illnesses. Sometimes, it takes up to six years to get a correct diagnosis.

May is Lupus Awareness Month, shedding light on this chronic autoimmune disease where the body’s immune system mistakenly attacks its own tissues and organs.

“Lupus is when your immune system, which is your defense against external invaders that don’t belong, basically starts to recognize self as being foreign and mounts an anti-self attack. So it’s like when your army turns on you,” explains Dr. Sue Manzi, a rheumatologist who leads the Allegheny Health Network (AHN) Autoimmunity Institute’s Lupus Center of Excellence and is the medical director for the Lupus Foundation of America’s board of directors. “We used to call it the disease of self sabotage. In lupus, it can target any and all organs, which makes it very complex.”

Researchers believe some of its origin is genetic with autoimmune diseases running in families.

“Not necessarily just lupus, but multiple sclerosis in someone or rheumatoid arthritis in someone else,” says Manzi. “So you’ll see sprinkling in families suggesting that there are definitely genes that make you more likely to develop lupus. And then we believe something then triggers the disease to happen.”

Triggers can be an infection or environmental exposures such as radiation or even sunlight.

“There’s scientific rationale behind it, but we know that there are other environmental triggers if you have the right genetic background,” Manzi says. “When all those pieces come together, the disease happens.”

Lupus is not common, but many cases are missed because it is so hard to diagnose. The highest risk population is young women between the ages of 15 and 45 along with women of color. African American women, Hispanic and Native American women are at higher risk of developing lupus, and it can be very different in any one individual.

“In some people, it can be very mild,” Manzi says. “They may have a rash, some fatigue, maybe some fevers. Then you can have somebody present with a premature stroke, heart attack or kidney failure requiring dialysis. So it goes from mild to severe and life threatening, and people die from it still. So it’s that spectrum of how diverse it can be that makes it tricky.”

Complicating things further is the fact that there’s no one test for lupus.

“If you go to your primary care doctor, and you’re a young woman and your joints are hurting, you’ve got low grade fevers, lymph nodes are swollen. The question is, are they thinking lupus? Probably not, because it’s not as common,” Manzi says. She said symptoms are often dismissed as being an infection or something else temporary.

“So you do some blood tests, because sometimes blood counts can be low, people can be anemic, their platelet counts can be low, their white blood cell counts can be low, their kidney function may be abnormal on a blood test,” she adds. “There are signs and there are certain tests we do that make you more suspicious that you might have certain markers, but it’s rarely that clear and definitive. That’s why it takes a little bit of expertise to put it all together and make the diagnosis.”

Treating lupus

Treatment has come a long way over the years.

“I always say back in the 1950s early ’60s, if you got a diagnosis of lupus, your chances of being alive in five years was 50%,” notes Manzi. Treatment now ranges from ibuprofen for mild joint pain to steroids to fight inflammation.

“Prednisone works really fast, but it has a lot of side effects so we we want to get you on something else quickly,” says Manzi.

For years, doctors borrowed immune suppressive drugs from other diseases and those given to organ transplant patients.

“It’s the same concept, it’s just that in lupus, you’re attacking yourself, not a foreign kidney. Over the past decade, it’s been exciting because we now have targeted biologic therapies where we know which cells are misbehaving in lupus. The more we started understanding what was going on in the body, the more we could design treatments that could target that particular process and nothing else.” Several targeted treatments are effective with minimal side effects and have been approved for use in the past 10 years. Manzi says it’s an encouraging time since there are even more therapies in the pipeline.

Manzi encourages patients to ask their doctor if certain symptoms could be a sign of lupus.

“You have to realize that in an 18 or 20 or 30-year-old, profound fatigue – not the kind of fatigue you feel when you work out and you’re tired – this is like, I can’t function right,” says Manzi. “Low- grade fevers, they may feel their lymph nodes swollen right under their arms or in their neck. They may have a rash that just isn’t going away. They may have chest pain every time they breathe. These are common manifestations that can happen, and I think it’s just always best to say in a young person that isn’t feeling right, could this be lupus?”

The Lupus Foundation of America is a good resource for more information. Visit them at lupus.org.