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 pain caused by lupus 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 said.
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,” said Judith James, M.D., Ph.D., executive vice president and chief medical officer at the Oklahoma Medical Research Foundation. “We see a peak between the ages of 15 and 35, but it can afflict people of nearly any age.”
Sandt began seeing James when her husband’s military assignment brought the couple to Oklahoma. The OMRF physician-scientist, who holds the Lou C. Kerr Endowed Chair in Biomedical Research, was able to bring Sandt’s symptoms under control and help her successfully navigate the birth of a healthy daughter, Bria, in 1999.
“Coming to OMRF saved my life,” Sandt said. “I don’t mind donating my time and my blood to research studies if it means someone else with this disease might have a new, better treatment.”
In addition to providing care to Sandt and others, James leads a team of scientists working to better understand, diagnose and treat lupus and other autoimmune diseases. One aspect of James’ research involved a study of close relatives of lupus patients.
Bria Sandt volunteered for one of James’ studies. A blood test showed she had elevated levels of anti-nuclear antibodies, which can be a sign of lupus. However, Bria Sandt has remained lupus-free in the years since the test, and James said this may never change.
“Genes only represent part of the story in lupus,” she said. 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,” said James, “and we’re still working to understand why some people develop lupus and others don’t.”
Today, Sandt lives with the disease that was once poised to overwhelm her, serving as operations manager for a nonprofit focused on at-risk youths. She still jet skis occasionally, and she’s proud of the role she and Bria have been able to play in advancing researchers’ understanding of lupus.
“These studies could lead to better management plans, better medicine,” Sandt said. “It’s cool to think we could be part of that history.”
OMRF is currently conducting research on lupus prevention, as well as how the disease starts and evolves. Researchers are recruiting volunteers who have lupus, think they may have lupus or are at risk based upon their family history. Interested in participating or receiving more information? Please call 405-271-7745.
