Army Maj. Toni Grimes was a success by every measure: She’d served 17 years of a military career, was attending an elite school to prepare her for future assignments, and was readying to deploy to Iraq. But in March 2007, an unseen enemy stopped her dead in her tracks. Grimes, who had been grappling for several years with mysterious symptoms such as lower abdominal pain and facial swelling, was diagnosed with the autoimmune disease lupus following a medical crisis that resulted in a collapsed lung. The day her unit deployed to Iraq, Grimes had to undergo a procedure to repair her lung. It would be the start of a difficult and painful battle with the disease — but one that Grimes would fight with a soldier’s determination.
After lupus-related early kidney failure required Grimes to be medically evacuated from Afghanistan in 2008, she spent years in a non-deployable status, battling complications from the disease that required months of hospitalization and forced her to re-learn basic tasks like speech and writing. When she was medically retired from the military in 2011 after 19 years of service, she opted to keep fighting on behalf of her community. She’s now an ambassador for the Lupus Foundation of America, where she promotes awareness of the disease and is also part of the Defense Department (DoD) team that reviews lupus-focused research proposals.
“My mission when I was in the Army was to lead my soldiers. And my new mission was to lead newly diagnosed lupus patients because I didn’t have that support initially. And once I got that support, it was amazing,” Grimes said.
Lupus, which is caused by the body’s immune system attacking itself, has a broad variety of symptoms that can affect everything from the skin and joints to the brain, heart and lungs. There’s no single test to diagnose the condition, and the most common sign — a distinctive butterfly-like facial rash — does not appear in all cases. Between 10 and 15% of lupus patients die early from related complications.
While some 1.5 million Americans are estimated to be affected by lupus, the disease has an outsized impact on certain communities. According to the Lupus Foundation of America, 9 out of 10 people with the disease are women, and the disease is three times higher in the Black and Native American communities, and twice as high in the Hispanic community than in white Americans. Of the roughly 12,000 veterans who live with lupus, half are women, says Hal Scofield, associate chief of staff for research at the Department of Veterans Affairs Medical Center in Oklahoma City and a published expert on the disease. In the active-duty military community, nearly 70% of lupus patients are female, and half, like Grimes, are Black. As the active military ranks that have historically been overwhelmingly white and male become more diverse, the disease is also becoming more common.
In the military, certain factors may make members more vulnerable. Military research shows that post-traumatic stress and exposure to environmental substances including ultraviolet light and silica dust — such as the fine sand ever-present during desert deployments to the Middle East — can all predispose troops to lupus. According to Scofield, lupus, which tends to be diagnosed around age 30, is among the most common non-trauma-related reasons that women receive an early discharge from the military.
Since 2017, the Defense Department has had a lupus research program, funded by Congress, to build greater understanding of the mysterious and devastating disease. To date, according to the Lupus Foundation of America, Congress has provided more than $86 million for DoD lupus research, including $10 million this fiscal year. Researchers hope that deeper knowledge of risk factors will help the military better care for at-risk troops, particularly women and people of color, and even in some cases, help prospective recruits make better-informed decisions about whether to serve.
Scofield, who said he is one of about 10 researchers at the VA studying lupus, is currently working on a project studying why lupus disproportionately affects women by drawing blood from known lupus patients and studying the genetic information it offers. In a separate project, he’s also studying the link between lupus and post-traumatic stress disorder by hunting for antibodies in the blood of PTSD patients that may be early indicators for the disease.
“You have all these genes identified now, but nobody knows exactly what’s the mechanism by which they contribute to lupus risk,” he said.
Gary Gilkeson, M.D., an advisory panel member for the DoD Lupus Research Program, said stress may be a common factor in many populations that experience increased lupus risk. Stress can be from trauma or deployments but also from realities like economic hardships and racism, which may help to explain the overrepresentation of lupus in certain communities.
“That’s part of what this research is — determining what role coping strategies and things along those lines … family support, social support, have in improving [outcomes],” Gilkerson said.
Officials with the Lupus Foundation of America say they’re working with Congress to increase funding for DoD lupus research to $15 million next fiscal year. And while researchers seek answers that may help future veterans, particularly women and people of color, growing awareness is helping to decrease the stigma for those fighting their own battle with the disease.
In 2023, the U.S. Army published a news story about Capt. Anna Walker, who had been diagnosed with lupus two years earlier and went on to compete and medal in the DoD’s Warrior Games while receiving treatment. With early retirement in the offing, Walker said she was already seeking ways to serve after hanging up the uniform, and hoped to find a position helping other veterans at the VA.
Read: Military Doctors Told Me I Was Fine — but I Had Lupus >>
Grimes, now 51, said she has learned to live with and manage the symptoms of her disease, even through complications like a recent blood clot and a collapsed lung last year. She said she’d advise other service members experiencing lupus symptoms to take them seriously, and not try to “suck it up and drive on,” as she had done.
“You are the CEO of your own body, and you only get one,” she says. “Get tested. Don’’t shy away from it. Get yourself educated about it.”
This educational resource was created with support from AstraZeneca.
