Lupus nephritis

Lupus tried but failed to crush Leah’s body and soul

Young woman smiling outdoors in front of a tree, wearing glasses and a white scarf.

Leah Messer of Wausau, Wisconsin had just graduated from high school, and was about to embark on her journey into adulthood. Three months after COVID-19 turned the world upside down, Leah’s own world was completely upended.

She began experiencing intense physical and emotional pain. Worst of all, Leah had no idea what was causing her symptoms. It was a scary situation for a young woman and her family.

Eventually, doctors would find the culprit — a serious autoimmune disease called lupus. It would severely weaken her body and threaten her very survival. Thanks to her UW Health care team and the countless prayers for recovery from friends and family members, Leah has rebounded by leaps and bounds. Some days are better than others, but Leah reached a place where she can appreciate all that is good, not only day by day but moment by moment.

It was Father’s Day weekend of 2020 when Leah’s mother, Erica Messer, found her 19-year-old daughter crying in bed with crippling joint pain.

A teenager in tears can be a regular occurrence in some families, but Leah was more of a stiff-upper-lip kind of girl. Erica couldn’t recall seeing her daughter cry since she was in grade school.

“Once I became a teenager,” recalls Leah, the youngest of five Messer children. “I kind of lived behind a mask. I wanted to be as self-sufficient as I could, so I tried not to show vulnerability.”

Seeing Leah in such distress, Erica knew something was seriously wrong. Unfortunately, several months would pass before the Messers would learn that lupus, an uncurable disease of the autoimmune system, was viciously attacking Leah’s body. Her form of the disease is called lupus nephritis because it targets the kidneys. Nine out of ten lupus patients are women, and many of them, like Leah, are diagnosed at a young age — often before 30.

Fighting just to survive each day

“Suffering” doesn’t begin to capture what Leah would experience over the next several months. Every day was a fight for survival, both physically and mentally.

“Food tasted disgusting,” Leah recalls. “I was nauseous, throwing up, lethargic and running a persistent 103-degree fever. I didn’t eat. I couldn’t sleep. That summer and into the fall, I spent most of the time in bed feeling like I was dying while I was alive.”

When things got bad enough, her parents took Leah to the local emergency room, where she would undergo an examination, tests and typically get sent home. Nobody could figure out what was wrong.

Writing about her illness, Leah said the emotional toll overshadowed her physical pain.

“I struggled with depression, self-loathing, fear, anger and self-pity,” she wrote. “The lifestyle and dreams I had before getting sick were shattered and my worldview was shaken to the core.”

For Erica and her husband Tracey, it felt like their daughter’s body was present, but the essence of this incredible young woman was gone.

“Near the end of August,” Erica recalls, “Leah turned as white as a sheet of paper. I told Tracey, ‘You have to take her in and don’t come home with her.’”

Finally: a diagnosis of lupus

Endless tests were performed during her stay at a Wausau hospital. Finally, a visiting doctor diagnosed Leah with lupus nephritis. Knowing she needed a more advanced level of care, doctors in Wausau quickly arranged for Leah’s transfer to UnityPoint Health – Meriter in Madison. There, she met the leaders of UW Health’s Lupus Nephritis Clinic, Dr. Shivani Garg, a rheumatologist, and Dr. Tripti Singh, a nephrologist (kidney doctor).

“Lupus is a devastating diagnosis, especially for such a young person,” says Dr. Singh. “Fortunately, Leah finally had an answer and we could start treating her with medication and providing emotional support. While we cannot cure these patients, we can, thankfully, help manage their disease and so they can live a more normal life.”

It took two weeks of hospitalization in Madison for doctors to find the best combination of medications. Leah came home with 17 different pills plus a liquid. Her daily pill intake is less today, although she still sorts her medications with a pill tray to ensure proper dosing.

“When I was in the hospital, they only allowed one visitor because of COVID,” Leah says. “My mom was there almost the whole time but when I was alone, I felt so vulnerable. One day, I remember someone from the chaplain’s office who sat with me for a couple of hours. I needed someone to open up to and he was such a blessing. The nurses were great too. As my appetite started to return, one nurse brought me cornbread, which I was craving. The little things meant so much.”

One of fewer than 10 health systems in the United States with a dedicated lupus nephritis clinic, UW Health is making a palpable difference for patients like Leah, who typically have a full plate of medications and medical appointments.

“Caring for patients with lupus nephritis is not a one-size-fits-all proposition,” says Dr. Garg. “Leah experienced a lot of anxiety about her condition and its impact on her future. Having a social worker on our team, along with doctors, nurses and a pharmacist, helped Leah get through her worst days.”

Convenience and close communication are also hallmarks of the lupus nephritis care team,” adds Dr. Singh. “Our patients typically see a rheumatologist and nephrologist on the same day, and our team routinely discusses every patient’s situation before and after their appointment,” says Dr. Singh.

Embracing sources of joy

More than three years after her diagnosis, Leah has transformed her mindset from dwelling on what she cannot do to relishing all that bring her joy. She completed a two-year associate degree in 2022 and teaches piano to more than a dozen students who come to her home for one-on-one instruction.

Now 22, Leah loves to cook, with Vietnamese, Korean and Moroccan dishes among her specialties. Favorite recipes include Korean fried chicken, cauliflower pesto veggie pizza, and sea salt walnut date pie.

Like her daughter, Erica is grateful to the UW Health lupus nephritis care team, which was instrumental in helping Leah move past survival mode and resume a life focused on living.

“Dr. Garg and Dr. Singh treat her like a star,” Erica says. “They’re on call all the time if anything comes up and respond quickly. They encouraged her to live a normal life that happens to include lupus, but not be defined by lupus.”