Juvenile Idiopathic Enthesitis related arthritis
Young Adult Honoree
Kylie was diagnosed with juvenile idiopathic enthesitis related arthritis on December 15, 2014, at nine years old. She had pain, swelling, and stiffness in her hands and feet to the point where physical therapy wasn’t helping anymore. She was referred to a Rheumatologist. It took a few months to get diagnosed because her lab work came back seronegative for the rheumatoid factor, she’s hypermobile, and her arthritis is enthesitis related.
Once she was diagnosed she felt confused and angry. She was young and didn’t know much about it. Once she learned more about arthritis, she felt she was alone and different from other people. Friends and classmates made it tougher after the diagnosis because nobody was aware of what it was. When Kylie said she had arthritis they would say “Isn’t that an old person disease”.
Physically, now she has a lot of challenging days and a lot of pain. Emotionally, she understands the disease better and how to control it. Her perspective has changed because initially she was very insecure about her arthritis and didn’t want people to know. Now her mindset is just because someone has arthritis doesn’t mean they can’t do things, it means they have to find a way to work through the struggles and still enjoy life.
Kylie received a grant from the Arthritis Foundation for her first JA Conference and that experience helped shift her initial perspective as well. There she learned that taking medicine isn’t bad, many people have to deal with arthritis, and she made a really good friend, who she talks to every day.
Kylie wants to share her story because she wants other kids and teens to know that arthritis can be manageable, they’re not alone, and you don’t need to stop doing things you love because of it.