Young patient speaks up about Lupus

After a 14-week hospital stay last summer, Adaobi Ugochukwu said the social and psychological effects of living as a young adult with lupus engulfed her.

Ugochukwu was diagnosed with the chronic inflammatory disease, which can affect various parts of the body, at age 15 after experiencing various symptoms for about three years. But until she came to the University of Florida to study biochemistry when she was 18, she hadn’t truly felt the depression that often comes with the disease.

Shortly she arrived at UF, Ugochukwu’s lupus flared up, and she experienced the signature symptoms of the disease. These included severe joint pain, pain in the back, shoulders and neck, fatigue, skin rashes, open wounds and debilitating chest pain that sometimes resulted in emergency room visits.

According to the Lupus Foundation of America, between 15 and 60 percent of people with a chronic disease like lupus will experience clinical depression.

Melissa Elder, M.D., Ph.D., an associate professor in the UF Department of Pediatrics and chief of the division of immunology, rheumatology and infectious diseases, said depression is common in patients who have lupus, particularly pediatric patients.

“People don’t understand what lupus is. It isn’t as recognized as other well-known diseases, so there is no automatic empathy for people who have it,” Elder said. “Adolescents, specifically adolescent females, have a really hard time with this. It’s a lot to handle.”

Elder said lupus patients often lose motivation over time and become depressed.

“There is no cure for lupus,” Elder said. “Patients have to deal with this for their entire lives. That is hard for girls who want to do well in school, succeed and excel, get married, have babies. I have to educate my patients by telling them all of that is possible if they follow the treatment plan.”

Before her sophomore year at UF, she was unexpectedly hospitalized at Shands Hospital for Children at UF and spent more than three months in her hospital room. Ugochukwu said she got very depressed, and her sister was worried about her.

“People think, ‘If you are at the hospital getting better, then what is your problem? Why are you so sad or upset?’ But while you are in here, it is so hard. It’s easy to slip into a depression,” Ugochukwu said.

Elder, who has been treating Ugochukwu for about six years, believes counseling is important for any child coping with a chronic disease.

Halfway through Ugochukwu’s stay, Elder and her team arranged for regular visits from board-certified art therapist Amy Bucciarelli, ATR-BC. Bucciarelli is a licensed mental health counselor in the Arts in Medicine program at Shands Hospital for Children at UF, where she visited Ugochukwu several times a week for nearly a month and a half.

“I am a big advocate of any program that can help the patients deal with the mental effects of the physical disease,” Elder said. “After Adoabi began art therapy, I saw a huge difference in her. She came alive again! It was amazing.”

During the art therapy sessions, Bucciarelli discovered Ugochukwu’s love of children’s books, specifically pop-up books. Together, Bucciarelli and Ugochukwu created two books while at the same time working through Ugochukwu’s depression.

“Lupus has affected me academically, socially, psychologically and physically,” Ugochukwu, who is now 19, said. “But, through the support I have received from people like Amy, I find ways to live with it.”

Ugochukwu just finished her sophomore year at UF and plans to be a pediatric rheumatologist one day.

“Pediatric rheumatologists are rare,” Ugochukwu said. “We need more of them. I think experiencing what it’s like to be a patient will help me be a good doctor.”