Patients and their families at Children’s National Hospital in Washington, D.C., may not fully appreciate what a compassionate provider they have in pediatric resident Adaobi Ugochukwu, MD—that is, until she reveals that she, too, has lupus and has battled it for most of her life. It was the very fact of having lupus, and her encounters with providers that initially inspired her to pursue a career in medicine.
Dr. Adaobi Ugochukwu
“I just wanted to be able to use my own personal experience to help other peoplem,” says Dr. Ugochukwu. She experienced many of the obstacles that pediatric rheumatology patients and their families encounter, including six years from onset of symptoms to diagnosis, long drives to access care, a shortage of pediatric rheumatologists and painful bullying in school. These struggles may be all too familiar for families whose children develop rheumatologic disease. Dr. Ugochukwu has made it her calling to change those trajectories for her young patients.
At the age of 11, she began having symptoms related to arthritis, pericarditis and anemia. Pain in her ankles and feet impaired her ability to move from class to class. She was no longer able to play the saxophone in the school band. Neither she nor her parents understood that her symptoms were connected to each other. Her episodes of shortness of breath and sharp chest pains led to emergency department visits, where she would get treatment but never an explanation for her condition.
She recalls that she sometimes kept her symptoms to herself, out of concern that she not worry her parents. During an 8th grade field trip to Universal Studios in Orlando, her joint pain was so severe that the chaperones obtained a wheelchair for her. This event wasn’t revealed to her parents either because she asked her chaperones not to divulge the information about her difficulties to her parents.
Finally, A Diagnosis
In December of her 8th grade year, both Dr. Ugochukwu and her parents concluded that her symptoms were much more serious than what they could manage at home and recognized that her condition showed no signs of going away on its own. Her pediatrician referred them to Shands Children’s Hospital at the University of Florida, so the family traveled 150 miles to Gainesville from their Tallahassee home to meet with pediatric rheumatologists there. So began her treatment, with an initial infusion of Cytomel and methylprednisolone, while her parents consulted with rheumatologist Renee Modica, MD.
Dr. Ugochukwu recalls that she was still unaware she had a rheumatologic disease. She thought her symptoms would abate with the medications she was receiving. But she did notice that after her parents consulted with the physician, their eyes were red and puffy, and she concluded that they had been crying.
For a while, her symptoms did improve. She noticed a new-found ability to run to catch a school bus and was elated: “I was so ecstatic, I just remember feeling so happy that I was healthy again. Of course, that didn’t last.”
Her formal diagnosis of systemic lupus erythematosus (SLE) was established when she was 15. “I remember that that helped a lot, just having a name for it,” she recalls. “Before I got the unifying diagnosis, I was trying to make sense of why this had happened to me.” She even began to believe that perhaps the illness was due to something she had done wrong in a past life.
She now reflects, “I later realized that [belief] doesn’t quite make sense, but I think there have been quite a few coping strategies like that that I’ve held onto, even now as a physician. My ‘physician self’ understands that this is not how lupus works, but the patient side of me sometimes needs to believe in these things to be able to go on in some way. One of the beliefs that I still have to this day is that there is a set number of people who will be diagnosed with lupus, a set number of tickets, and each person with lupus has received a lupus ticket. But I received a ticket and spared someone else.”
Purpose & Resilience
Dr. Ugochukwu’s honest and courageous embrace of living with chronic disease, it turns out, has served her well. For the remainder of middle school and into high school, her parents were able to help with appointments, managing medications and symptoms. Through those times, Dr. Ugochukwu’s scholastic record never faltered. She attributes her ability to achieve to her parents’ unflagging support. Both parents have PhDs (her father in organic chemistry and her mother in biochemistry), and they always urged her to do her best in school. “They emphasized that lupus was not an excuse to not do well in my classes, that I should try to have goals for the future. That was very motivating for me.”
Dr. Melissa E. Elder
Melissa E. Elder, MD, PhD, professor and chief, Department of Pediatrics-Immunology at the University of Florida, was one of Dr. Ugochukwu’s physicians during her years at Shands. She says Dr. Ugochukwu was able to fight through her disease and “continue to be motivated; she’s definitely an exception and definitely to be admired in that regard.”
Dr. Ugochukwu continued to have flares and to curtail her physical activities. She also experienced bullying, she recalls, because of the effects of lupus, which caused skin changes and weight loss from the inflammation. By the time she became a high school senior, she had organized a Lupus Lunch and Learn, with support from faculty and other students. As a result, many of her teachers and fellow classmates thanked her and responded positively to their awareness of lupus. It was that event that pushed her toward medicine, she says. Because her parents were PhD research scientists, she had already been thinking of a career in science. But through her own experience, of having to travel five hours round trip to see the pediatric rheumatologist, she began to realize that going into pediatric rheumatology offered both a career path and a way to utilize her own experience to help others.
Coaching Patients & Families
Receiving a diagnosis like lupus is monumental for both patients and their parents, Dr. Ugochukwu says. The fear of losing their child to a fatal condition is one component of the diagnosis. “From what I’ve seen, from talking with my own parents and other parents and caregivers, this also feels like the loss of dreams for their child.”
With this knowledge front and center, Dr. Ugochukwu embarks on counseling families about quality-of-life issues. She addresses myriad questions from parents, questions that go way beyond how to manage medications and treatments. Questions come up for parents about how to cope with the disease, and even whether their child can go to college. She sees her role at this juncture to provide reassurance. She is intensely aware that the psychological and emotional aspects of having lupus can wear on a person just as much as the physical components.
“You may feel that you’re missing out on life.” And if she hasn’t told them already, that’s when her disclosure about her own journey with lupus comes into the conversation. Following that, she shares resources with families and notes that unlike her own time as a childhood lupus patient, now support groups, advocacy groups and online communities abound.
In addition, she notes, “I always try to caution my younger patients, especially the newly diagnosed patients, to think of themselves as a person. I ask them to describe themselves without using the word lupus, to describe their character, their personality. I tell them to be proud of those core aspects of themselves that won’t be touched by the illness. The important thing about building resilience is to allow them to grow and appreciate themselves as apart from the disease.”
Education Mission
Dr. Ugochukwu feels fulfilled when offering resources and advice to patients and families. She also wants to make a difference through helping her colleagues to understand their patients. She’s currently working on a guide for her fellow residents. It includes things to consider with young lupus patients who are hospitalized.
She notes that colleagues often come to her for advice. What she communicates is that physicians need to take into consideration the social aspects of the patient’s situation. “We know the treatments, but you lose so much of your dignity and humanity in the hospital: you don’t get to dictate your schedule, you don’t even get to wear your own clothes, tests are performed on you, etc. When providers don’t acknowledge how dehumanizing the hospital can be, that can really affect you.”
Dr. Elder acknowledges that although her group makes a concerted effort to keep the care personal, and to include social work and other attendant providers, “it can be hard in the hospital because everyone is overworked. [Adaobi] was in and out of the hospital a lot. It’s kind of surprising that she ended up going into [this specialty]. I think she wanted to make a difference for the next generation.”
With all her outreach to families and colleagues, Dr. Ugochukwu has created meaning from her experience, which she characterizes in this way: “When I share with patients and families that I have lupus, their faces light up. You feel as though everything that you’ve gone through, everything that you’ve endured, has had a meaning, has had a purpose.”
Gretchen Henkel is a health and medical journalist based in California.
