Lupus Nephritis: Indya's Story

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The timing could not have been worse: it was month two of the COVID-19 pandemic in America and Indya was experiencing new, painful symptoms – stiff joints, swelling and difficulty moving. She needed answers and treatment immediately, or she risked suffering permanent damage.

Indya smiling Fearful for her daughter's health, Indya's mother Monique called Children's Hospital of Philadelphia (CHOP). Within days, mother and daughter had a virtual doctor's visit where Indya detailed her symptoms, when and how they started, and what she'd done six months prior when she had similar symptoms that disappeared without a trace after a month.

"In mid-November (2019), I got really sick and my joints were really stiff," Indya explains. "I couldn’t move my fingers, and it was really difficult to move my arms and legs. It just made everything more challenging – from school work to walking the dog."

At the time, Indya's family encouraged healthy eating habits – more fruits and vegetables – to boost her immune system to fight whatever was going on. Then, suddenly in mid-December, the symptoms vanished and she was able to resume her daily activities. Indya's family chalked up the experience to a virus and moved on with their lives.

Return of symptoms amid family's COVID-19 outbreak

Then in May 2020, the symptoms were back and seemed worse than ever. Indya's family held off seeking medical attention for a few critical days as they dealt with serious health issues of their own: The entire family – except Indya – was diagnosed with COVID-19.

Indya's dad and grandmother had to be hospitalized (both had other serious health issues); while her mother and brother were able to isolate at home.

A few days later, Monique was able to schedule a telehealth appointment for Indya with Jon (Sandy) Burnham, MD, MSCE, clinical director of the Division of Rheumatology, director of the Lupus Program, and co-director of the Lupus Integrated Nephritis Clinic at CHOP.

After a virtual examination and lab tests completed in the next two days, Dr. Burnham diagnosed Indya with lupus nephritis, an autoimmune condition that causes inflammation in – and damage to – different parts of the body including organs, joints and skin. Indya was experiencing a flare-up of her disease, and it was affecting her kidneys. If her condition was not controlled soon, she could experience permanent kidney damage.

A special kind of hospitalization

Dr. Burnham recommended Indya be hospitalized for a complete medical work-up to treat and stabilize her condition, and determine if any irreversible damage had been done.

On June 6, Indya came to CHOP. She started in the Emergency Department, where she was again tested for COVID-19. This time, the test was positive.

Indya was admitted to the hospital's Special Isolation Unit for youth with suspected or confirmed COVID-19. Thankfully, her mother was able to stay with her at the hospital. "I needed help with everything – brushing my teeth, getting washed, eating," Indya says.

Clinical staff from Rheumatology, Nephrology and Endocrinology assessed Indya regularly and collaborated on her care in the hospital. Together, they developed a lupus treatment plan she could continue back home.

Being in the hospital during the pandemic – especially on a special unit – was a different experience for Indya and her family. Anytime a staff member entered Indya's room, they had to put on full protective gear (gown, mask, gloves and face shield) to protect themselves from catching COVID-19.

Staff were helpful, but not intrusive, Monique says. Meals were delivered to the room and "the entire staff's hospitality and consideration made the whole experience easier for us," Monique says.

After six days in the hospital, Indya was released home. She was prescribed immune-suppression medication to treat her lupus and a low sodium, low-carbohydrate diet.

Living with lupus

Indya with her family Three months after her hospitalization, Indya says she's feeling good and is excited to return to school work. Now 17 and a high school senior, she will continue home schooling – a decision her family made long before the pandemic. She looks forward to continuing her interest in music: writing songs, playing guitar and singing. Indya hopes to pursue a career in music and one day, to have a family of her own.

Indya will continue to be followed by the Lupus Integrated Nephritis Clinic at CHOP, receiving regular assessments from Rheumatology and Nephrology.

Our goal right now is to avoid another flare-up," Monique says. "But, if Indya experiences a problem, we know CHOP will be there to help.

Dr. Burnham credits the family for their contribution to Indya's recovery: "The thing that is so impressive about Indya and her family is their irrepressible spirit and positive attitude.

"They have been through so many struggles individually and as a family, yet they always come to visits prepared with smiles and words of gratitude. I learn so much from their dignity and grace."

Next Steps

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