As a high school student, Ellie Killinger from Middleburg, Virginia, went from playing field hockey and volleyball, serving as class president, acting in musicals, and writing and performing songs to being bedridden.

It all started in December 2018, when Killinger, then a 14-year-old ninth grader, started feeling nauseated all the time. Over the next year, her symptoms progressed to include eyelid swelling, a rash across her cheeks and nose, recurrent mouth sores, fatigue, joint pain and brain fog.

“School was becoming challenging for me, and that was never the case before,” Killinger recalls.

Killinger’s parents took her to several doctors and specialists in the hope of finding a solution to her ailments. Eventually they turned to Johns Hopkins Children’s Center (JHCC) and a team of physicians there, including Ekemini Ogbu, M.B.B.S., M.Sc., director of the Pediatric Lupus Multidisciplinary Clinic and assistant professor of pediatrics at the Johns Hopkins University School of Medicine.

About the same time she first visited JHCC, Killinger developed severe tremors in her body, including her legs and arms. “She had difficulty holding a cup, and couldn’t walk down steps,” says Killinger’s mother, Angela.

In February 2020, Killinger was admitted to JHCC for eight days. During that time, she was diagnosed with systemic lupus erythematosus, a chronic autoimmune disease that causes uncontrolled inflammation and was involving her entire nervous system.

Lupus — which can develop at any age but starts in children in 20% of cases — impacts nearly 1.5 million people in the United States. The American Academy of Pediatrics estimates that some 10,000 of those patients are children. The disease has no known cause and affects many parts of the body in unpredictable patterns, including the joints, skin, and major organs such as the heart, kidneys and brain. Some patients experience mild cases of lupus, while in others, it can be life-threatening.

Pediatric patients tend to have more severe forms of lupus and the disease is more common in girls. Additionally, there is a higher risk of children developing lupus if they are African American, Asian American, Hispanic/Latino, Native American or Pacific Islander, or if there is a family member with lupus or another autoimmune disease.

“The diagnosis of lupus can be challenging, because at present, there is no single test that can do it reliably,” says Ogbu. “Diagnosis is based on the patient’s symptoms, physical examination, and various lab results and tests, which fit together like pieces of a puzzle.”

The treatment for lupus varies from patient to patient and involves managing inflammation with medications and lifestyle changes. In Killinger’s case, her therapy started with some commonly used approaches: biologic therapy, chemotherapy and steroids. Ogbu has varied Killinger’s treatment plan a few times to find the right fit for her, a strategy that is typical for patients with lupus. As Killinger’s condition has improved, her medications have gradually been reduced.

A year after Killinger was diagnosed, the now 17-year-old high school junior feels like she has gotten her lupus under control. While lack of energy keeps Killinger from participating in many of the activities she enjoyed before her diagnosis, she is back to writing and playing music. Killinger even won first place in a local competition for her song, “Sick,” about the search for the cause of her illness.

Killinger also has begun a clothing line called #EllieRose Strong, and has used it to raise $9,000 in support of lupus research at JHCC.

“Ellie came in with a rare presentation of lupus that affected her nervous system,” Ogbu says. “She is sharing her experience with her disease to raise awareness about lupus in children. She is so resilient.”

There is no cure for lupus. Patients with the disease can have flare-ups and periods of remission when they experience partial or complete lack of symptoms. Still, Killinger remains hopeful about her future, whether playing musical “gigs” or planning for college, where she hopes to major in clinical psychology with the goal of working with kids who have chronic illnesses.

Killinger often thinks back on the past 2 ½ years without remorse. “There wasn’t a lot of time to feel sad or grieve the things I lost when I was sick,” she says. “It’s so normal for me now, but wow, that was a lot to go through.”

Killinger, her mother and Ogbu are available for interviews.

May is Lupus Awareness Month.