Doctor after doctor misdiagnosed or shrugged off Ruth Wilson’s rashes, swelling, fevers and severe pain for six years. She saved her life by begging for one more test in an emergency room about to send her home, again, without answers.

That last-ditch test found the Massachusetts woman’s kidneys were failing – because her immune system had been attacking her own body all that time and nobody caught it.

“I just wish there was a better way that patients could get that diagnosis without having to go through all of the pain and all of, like, the dismissiveness and the gaslighting,” she said.

Wilson has lupus, nicknamed the disease of 1,000 faces for its variety of symptoms – and her journey offers a snapshot of the dark side of the immune system. Lupus is one of a rogues’ gallery of autoimmune diseases that affect as many as 50 million Americans, and millions more worldwide – hard to treat, on the rise and one of medicine’s biggest mysteries.

“You look normal. People see you and they don’t think you have this horrible disease,” said Wilson, who balances her illness with volunteering to help educate the public and even doctors about life with lupus.

Eighteen months of grueling treatment saved her kidneys after that long-overdue diagnosis. But over a decade later, the Littleton, Massachusetts, woman still lives with daily pain from lupus. Deep fatigue and brain fog — difficulty with concentrating, short-term recall, multitasking — wax and wane.

Therapies have improved in recent years, from high-dose steroids and drugs that broadly suppress the immune system to more lupus-targeted options. Wilson gets a monthly targeted IV treatment and takes about six daily medicines to calm her overactive immune system and related symptoms.

Dr. Mariana Kaplan with NIH’s Systemic Autoimmunity Branch said it's "been challenging to treat lupus because not everyone responds the same way to the medications we. The way the science is evolving may lead us to a better understanding of what causes these diseases, what perpetuates them and how to prevent them or treat them in the future.”

Wilson learned to wear sunscreen and a big hat before going outdoors and how to ration her energy in hopes of avoiding flares. When her kids were old enough for school, she returned, too, getting degrees that led to laboratory research and data science jobs – and a better understanding of her own disease and its treatments.

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