A mother lives with lupus, her daughter with its shadow
Pennie Sandt is a daredevil. She loves flying over waves on a jet ski, the wind in her hair. But once upon a time, bouts of undiagnosed pain threatened to derail her life.
Her joints and muscles constantly ached. “There was a day at work when I could not physically grab a binder from overhead,” she remembers. Then in her mid-20s and accustomed to being able to take long hikes in the mountains, Sandt knew that something was wrong with her body. “I felt like the pain was going on forever. It just wasn’t going away.”
The culprit? Lupus.
In lupus, the body’s immune system becomes unbalanced and begins to attack itself, leading to chronic inflammation that causes damage to organs and tissues. People with lupus experience periodic flares that can include extreme fatigue, rashes, fevers, anemia, sensitivity to the sun, and joint pain or swelling.
“Lupus tends to be a disease that affects women of childbearing age,” says OMRF Executive Vice President and Chief Medical Officer Dr. Judith James, who has treated patients and studied the disease for over three decades. “We see a peak between the ages of 15 and 35.”
OMRF is conducting research on lupus prevention. We’re recruiting participants who’ve had a positive test for antinuclear antibodies and at least one other lupus symptom. Interested in participating or receiving more information?
Call 405-271-7221.
It took Sandt’s physicians nine months to determine she had lupus. The diagnosis, though, brought little relief. Her doctors, who she says, “kind of, sort of knew a little about lupus,” treated her with hydroxychloroquine, a common lupus drug. Still, her symptoms persisted.
Soon after, a pregnancy meant she needed expert care. Her husband’s military assignment brought the family to Oklahoma, and Sandt to OMRF and James.
The OMRF physician-scientist was able to bring Sandt’s symptoms under control and help her successfully navigate the birth of a healthy daughter, Bria. “Finding Dr. James,” says Sandt, “felt like I could breathe again.”
In the ensuing decades, James has continued to care for Sandt, helping her manage symptoms that, at times, threaten to debilitate her. Sandt’s course of treatment has involved the use of steroids and other medications to control disease flares. Still, understanding how to manage not only her disease but also the drugs and their effects, she says, has been “a learning process.”
“Sometimes, when you’re on them, you feel superhuman,” Sandt says. “And it’s easy to overdo things.” When that happens, her body can “pay the price,” leaving her bedridden. Over time, with the help of James, Sandt has figured out how to balance these ebbs and flows. “My husband and I both feel like she pretty much saved my life,” says Sandt, now 52.
In addition to providing care to Sandt and others living with lupus, James leads a team of scientists working to better understand, diagnose and treat lupus and other autoimmune diseases. One aspect of this research involved a study of close relatives of lupus patients.
A blood test showed Bria had elevated levels of antinuclear antibodies, or ANAs, which can be a sign of lupus. “I always figured that was the case,” she says. Still, she knew the reading “wasn’t a diagnosis. It was just a signal I needed to be more proactive about my health.”
While studying nursing at the University of Oklahoma, Bria participated in monthly blood draws and tests to help investigators learn more about lupus before it starts. Now 25 and a neonatal nurse, she’s remained lupus-free. And that, says James, could well remain the case.
“Genes only represent part of the story in lupus,” she says. While close relatives of those with lupus carry a higher risk of developing the disease, many other factors also play a role. “It’s an extremely complicated picture,” says James, “and we’re still working to understand why some people develop lupus and others don’t.”
In the meantime, the specter of disease doesn’t frighten Bria. “My mom is the best person I know, and lupus never defined who she is,” she says. “There were days she would be down for the count. But we would just take things slow for a bit and get back to traveling and adventures.”
Today, Pennie lives with a disease that once threatened to overwhelm her. Her husband has retired from the military, and she serves as operations manager for a nonprofit that focuses on at-risk youths. “I’m super passionate about it,” she says. “I love working there.”
Even if her daughter is one day diagnosed with the disease, Pennie remains optimistic. “Bria has grown up seeing me and what I can do. She knows she can have a normal life.”
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Read more from the Winter/Spring 2025 edition of Findings
President’s Letter: The Life-Changing Impact of Clinical Research
The Searcher
Voices
Ask Dr. James
Three-Peat
Meeting the Challenge
A Biologist From Birth
On a Mission
Coming to America
