Raising Community Awareness Towards “the Silent Disease”

By Charlotte J. Edwards

Holmdel resident Christina Rizzo remarks that she did not anticipate changes in her daughter Natalie’s gait to be a warning sign of juvenile arthritis. Natalie is now 6-years-old, and though she received the news of her diagnosis at the age of 4-years-old, her parents believe her journey with this autoimmune disease began at the age of 17 months old, as they noticed that she was not bearing weight on her ankle when she was learning to walk. Alarmed, her parents took Natalie to be seen at the Emergency Room at Monmouth Medical Center, where she underwent an x-ray and an examination by a pediatric orthopedist; however, the initial test results did not reflect any abnormalities, and Natalie resumed walking normally again. Two years following this incident, her mom was concerned after observing that Natalie seemed “very stiff” when she walked, and after a blood test denoted a striking elevation in her inflammatory markers and a visit with the pediatric rheumatologist Dr. Anna Carmela Sagcal Gironella at Jersey Shore University Medical Center, she was diagnosed with Polyarticular Juvenile Idiopathic Arthritis.

After her diagnosis was confirmed, Natalie and her family collaborated with Dr. Gironella and the team at Jersey Shore to create a treatment plan that was tailored in accordance with the specific type of her arthritis. Christina shares that the biggest obstacle that her family has endured is learning how to adapt to a new routine, as she notes, “We’re always running around now. Natalie receives routine Humira injections that are self-administered, takes oral medication weekly, and a daily pill to manage and mitigate the inflammation. Her immunity is also suppressed now as a side effect of the Humira shots.” The doctors predict Natalie to be in remission soon, and Christina expresses her profound gratitude for the care and attention provided by the entire staff at Jersey Shore, emphasizing, “Hackensack Meridian and the team at Jersey Shore have been really great. They know what they’re doing, and we’re really happy with them”

The Arthritis Foundation has also served an invaluable role in Natalie’s experience with juvenile arthritis since the beginning, as Christina reflects on how touched both she and her family was upon their immediate and continual ushering of resources and support. Following Natalie’s diagnosis, the foundation sent her a care package, and helped to connect her parents with other local families affected by juvenile arthritis. In conversation with Christina, she shared that she was surprised at discovering the rare prevalence of this autoimmune disease within the community when she posted about Natalie on the ‘Holmdel Moms’ Facebook page. “There were only two moms that responded and shared their child’s experiences with juvenile arthritis,” she commented, continuing, “The foundation has made this process feel less isolating for us. They send all affected children and their families care packages and a backpack with a teddy bear that can be heated up in the microwave. They also include educational materials on the different forms of juvenile arthritis and research opportunities.”

Among the plethora of ways that the foundation has supported Natalie and her family, they were most moved when Emily Meyers, Associate Director for the New Jersey chapter of the Arthritis Foundation reached out directly to Christina to invite Natalie to be the youth honoree at the 2023 Jingle Bell Run. The 5K race is scheduled for December 2nd at Bell Works in Holmdel, New Jersey, and will offer a myriad of festivities available to participants, such as a Kids Zone, “Strut your Mutt,” a hot chocolate station, and a meet-and-greet with Santa to infuse some holiday cheer while raising awareness for an important cause. In addition, all runners will receive a medal and t-shirt when they complete the race.

Natalie is described by Christina as an avid swimmer who is an enthusiast for being close to the water, enjoys playing with her younger brother, Joey, and loves school. Most importantly, she is devoted to utilizing her innate resilience and selflessness to not only share her story, but to inspirit the community to become involved in advancing research to combat “the silent disease.”

For more information about Natalie’s story, the Arthritis Foundation, and to support Natalie’s team for the race, you can visit: https://events.arthritis.org/index.cfm?fuseaction=donorDrive. event&eventID=1546.