For most of my childhood, I was a normal kid. I had three older brothers, so I was the princess of the family, and I enjoyed dancing, cheering and playing outside. In the spring of 2012, I suddenly became sick. When my mom took me to the doctor, we were told it was just a virus, but as the spring went on, things got worse. I had a fever and a rash; I couldn’t dance anymore because it hurt too much; and when we went on a family vacation, I had to be carried to the beach because I couldn’t get out of bed. On the way home from our trip, we stopped at the Children’s ED because my parents were so worried.
We were referred to Dr. Prahalad, a Children’s rheumatologist, who diagnosed me with Systemic Juvenile Idiopathic Arthritis (SJIA). Dr. Prahalad was very kind and took the time to educate us on what was happening to my body, because we had never heard of a kid getting arthritis before.
Dr. Prahalad put together a plan to help me get healthy. I started taking Actemara, a biologic administered by infusion. Basically, my cells are incomplete, like Swiss cheese. The Actemara goes in and makes a bubble around my cells, which prevents my body from fighting against itself. Every few weeks, I get an infusion at Egleston. Last month marked my 90th infusion in four years. I can now take out my own IV and I don’t have to go in as frequently.
The infusions have helped me feel much better. I am able to swim competitively, attend art classes, play piano and violin, and continue my studies at home. I was even able to skip two grades, so I am a sophomore in high school at the age of 14.
I am also very active with the Arthritis Foundation. I am an advocate for arthritis on Capitol Hill and am the captain of a fundraising team that helps send children with arthritis to camp.