At age 12, Summit Health patient Aanya was active with schoolwork, sports and playing piano. At the same time, she and her mother, Ratna, started noticing unusual symptoms that took them on a monthslong journey for answers.
Ratna remembers noticing Aanya’s ridged, discolored fingernails first. Her finger joints were swollen, making piano playing uncomfortable. Aanya also started losing some hair.
“Before Aanya’s symptoms began, hairstylists had a hard time managing her hair because it was so thick and full,” Ratna recalls. “It was concerning to see how much hair was falling out.”
Ratna alerted Aanya’s pediatrician, Daniel Hermann, MD, who ordered blood tests and referred Aanya to a pediatric rheumatologist at Summit Health. After more tests to rule out other conditions, Aanya was diagnosed with systemic lupus erythematosus, the most common type of lupus.
Understanding lupus
Lupus is an autoimmune disease that causes inflammation throughout the body. In people with this condition, the immune system attacks healthy cells and tissue. These attacks can cause damage to many body systems, including the skin, joints, kidneys, brain, heart and lungs.
What causes lupus is unknown, but studies show genetic and environmental factors may be triggers.
The American Academy of Pediatrics estimates that up to approximately 10,000 children are among the 1.5 million Americans living with lupus. While anyone can develop lupus, it’s more common in females ages 15 to 44.
Additionally, people who are African American, Asian American, Hispanic, Native American, Pacific Islander or have a family member with lupus or another autoimmune disease, are at higher risk.
Lupus affects everyone differently in terms of symptoms and their severity. Some symptoms may include:
- A butterfly-shaped rash on the face called a malar rash
- Joint pain or swelling
- Mouth sores
- Hair loss
- Fatigue
- Weight loss
- Fever
- Chest pain
- Shortness of breath
Diagnosing lupus can be challenging because symptoms come and go and mimic those of other conditions. Tests commonly used to confirm a diagnosis include blood and urine tests and tissue biopsies; Aanya bravely underwent these over the course of a couple months.
Ratna says Aanya’s doctors were supportive throughout the diagnosis journey. “Dr. Hermann was very sweet to check in, and (her pediatric rheumatologist) would call to make sure Aanya and I understood everything. We were in good hands.”
Treating and living with lupus
Because lupus causes many different symptoms, treatment varies from patient to patient. And because lupus is a multisystem condition, treatment may involve seeing specialists in addition to a rheumatologist, such as a nephrologist, dermatologist or pulmonologist.
Aanya was prescribed steroids to reduce inflammation and anti-inflammatory medicine to relieve pain. Within weeks, her hair loss and joint pain subsided.
After about nine months, Aanya transitioned to immunosuppressants, which keep the immune system from overreacting, and antimalarial drugs to reduce the risk of symptom flare-ups.
Aanya visits every few months as she continues treatment. While there’s no cure for lupus, there are several approaches to managing the disease and ongoing research into targeted therapies shows promise.
Ratna is seeing that resilience firsthand. Now a 16-year-old, Aanya is as active as ever, playing soccer, running, and participating in Girl Scouts. She is even weening off the immunosuppressants.
“Aanya’s feeling good and has stayed very positive,” says Ratna. “She knows she’s living with lupus, but she knows not to think about it too much… that’s the beauty of being a kid.”