Meet Madeline: 2022 Family Advocacy Day Champion
Madeline is participating in Speak Now for Kids Family Advocacy Day from June 12-14. Through this event, Madeline and her family will discuss her health journey, Connecticut Children’s Medical Center’s role in providing her with necessary health care services, and why the public and our elected officials must invest in the future of patients like Madeline.
Madeline’s first experience with arthritis was at the age of 13.
“I woke up one morning and noticed that I had rashes up and down my whole body,” says Madeline. “The rashes seemed to come and go, but then I also started to get extremely high fevers and wasn’t able to move out of bed without being in excruciating pain.”
After many visits to their family doctor, Madeline was sent to a rheumatologist at Connecticut Children’s Medical Center where she was diagnosed with systemic juvenile idiopathic arthritis (SJIA), a rare subtype of juvenile idiopathic arthritis that causes body-wide inflammation. However, her condition worsened and then she developed macrophage activation syndrome (MAS), a severe complication of rheumatic disease particularly in SJIA.
Madeline underwent several tests, including a bone marrow biopsy, to ensure that there weren’t other unseen health issues. She was put on an IV of high dosage steroids and a new biologic drug to treat her SJIA and MAS.
Now, medication helps maintain her condition and she sees her rheumatologist regularly. She is also seeing a dermatologist to treat morphea, a rare skin rash of small red or purple patches.
“Madeline’s diagnosis was scary, overwhelming and confusing,” says Caroline, Madeline’s mother. “We slowly began to learn about SJIA and how it would impact Madeline’s life. We are grateful for the amazing care she received at Connecticut Children’s Medical Center.”
Today, Madeline is doing great and living a healthy life. She is athletic and participates in track and field and soccer.