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Owning Life with Lupus

February 01, 2019

Jennifer’s certainty that something was wrong started with an unfamiliar, unidentifiable pain in her kidneys. It took five years, myriad more symptoms, and many medical tests to track down the source: her own immune system.

In the summer of 2016, Jennifer was diagnosed with systemic lupus erythematosus (SLE), more commonly known as lupus. The autoimmune disorder affects some 1.5 million Americans, according to the Lupus Foundation of America. It is often characterized by painful inflammation in the skin, blood vessels, joints, kidneys, lungs, and/or other internal organs—but its presentation varies widely from person to person. Jennifer is not alone in taking a years-long journey to find her diagnosis. Once she did, she was referred to Yale and Dr. Fotios Koumpouras, MD, BS, Assistant Professor of Medicine (Rheumatology) and Director of the Yale Lupus Program.

“I made the joke with Dr. Koumpouras,” says Jennifer, “I said, ‘to be honest, the only thing I know is that they always talk about lupus on the show House, and it never is lupus! That’s all I know.’” That relative unfamiliarity didn’t last for long.

“He really was great about helping me connect,” Jennifer says—with both people and resources—and “understanding how the disease would affect my body, my mind. Life with lupus—it’s still something that I’m learning two years later.” It was initially unclear when or whether she would achieve remission from the disease, but after seven months working with the Program, Jennifer entered a remission that continues to this day. She credits this to having a vigilant, active role in her own care and the continuing support of Yale Lupus Program.

While receiving treatment at Yale, Jennifer learned about the opportunity to participate in clinical research by making her tests and physician visit details available to those studying lupus and searching for more effective therapies at the School of Medicine. She was motivated to take an active approach to not only managing her condition, but also supporting further study. “If research from my case could possibly be used to find a cure so other people don’t have to endure this disease as badly as we do now,” she says, “then I’d rather be a part of it than not a part of it.”

Jennifer found that, even though there is no cure for lupus, her participation helped her as well as the researchers and future lupus patients. “It’s a great opportunity to connect more with your doctor and the medical team behind your disease,” she says. “It helps you learn more about your disease, and it doesn’t take a tremendous amount of time out of your schedule. I would definitely encourage anyone that could be a part of it to join.”

The dedication of Dr. Koumpouras and his research team was an inspiration. “It’s not just a job for them—it’s a real passion,” Jennifer says. Another inspiration is her family—Jennifer finds support in her parents, sister, husband, and stepdaughter.

“I’m very fortunate that my husband, Chuck, listens. He’ll just listen to me talk a mile a minute about whatever might be going on,” Jennifer says. “To have someone you can just unleash everything to, and not be a burden, was a big help.”

Jennifer’s family is not new to supporting one another through difficult times; her brother passed away at 25, a few months before she got her diagnosis. “He’s a huge part of what makes me strong,” Jennifer says. “He never let anything bring him down, and he channeled that into my own health, to be stronger than anything that was going to be thrown at me, and just push through and come up in the end being tougher than the disease.”

To those recently diagnosed with lupus, Jennifer says, “you’re not owned by it; it shouldn’t take over everything.” To their supporters, “just realize that this person is going to struggle, but they’re so much more than their diagnosis.”

Submitted by Annette Torres on March 18, 2019