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.”
