Family Rallies Around Daughter With Juvenile Arthritis Through Advocacy
Most 12-year-olds haven’t helped make a law. But Kyleigh O’Brien, along with her family, advocated for the passage of a bill last year that requires more transparency from pharmacists about the medications they dispense for the treatment of autoimmune diseases, such as juvenile arthritis.
At eight years old, Kyleigh, who lives in Columbia, was diagnosed with juvenile idiopathic arthritis and Crohn’s disease after she started feeling pain in her joints, especially her knees. Also known as juvenile rheumatoid arthritis, the disease affects six of her fingers as well.
Her parents knew something was wrong when Kyleigh complained of stomach pain and headaches, and her temperature climbed to 101 to 102 degrees four to five days out of the week. Her parents took her to a doctor, who incorrectly diagnosed her with bilateral tendonitis, a disease rarely seen in young people. Six weeks later, Kyleigh came home crying to her mother, Janet O’Brien.
“She didn’t want to go to school again because she would have to sit ‘crisscross applesauce’ (cross-legged), and she couldn’t do it,” said Janet to the Columbia Missourian.
After getting X-rays done at an urgent care center, a doctor all but ruled out juvenile arthritis as the cause. Finally, another diagnosed the disease, along with Crohn’s disease. While both are chronic autoimmune diseases and can be treated in the same way, they are not related in Kyleigh’s case.
According to Mayo Clinic, juvenile idiopathic arthritis is the most common type of arthritis in children under the age of 17. The National Institute of Arthritis and Musculoskeletal and Skin Diseases estimates that 294,000 people in the U.S. under 18 have arthritis or another rheumatic condition.
Also known as pediatric rheumatic disease, juvenile arthritis is used to describe the many autoimmune and inflammatory conditions found in children.
Symptoms of juvenile arthritis include limping in the morning due to stiff joints, clumsiness, swelling of the lymph nodes in the neck, stiffness, fatigue and rashes. The specific cause of the disease is unknown, but both genes and the environment play a role according to the Arthritis Foundation.
Kyleigh has benefited from treatment with biologic medication. But it’s only one form of therapy she’s benefited from, her parents said. They said that advocating for others with the disease has helped lift her spirits.
“Advocating is empowering because you aren’t sitting around feeling sorry for yourself,” said her father Kayne O’Brien. “You are active and thinking about and understanding why this is happening.”