"I don’t know what parenting of an average child feels like... We have planned everything around this disease..."
Amelie* is 14. She has JIA.
It took about 4 months to receive a diagnosis when she was 18 months old, and she started treatment with methotrexate and naproxen.
Over the years she had repeated steroid injections before alternative treatments were introduced, and she is now on four medications to control her JIA. The disease is now largely controlled, but she has erosion in her hands, feet and jaw, as well as skeletal deformities as a result of the JIA being uncontrolled for so long.
She has missed a lot of school, and has a limited lifestyle due to the JIA, and is very fatigued.
She had major ankle surgery last year, fixing the joint in place to prevent further flare-ups and damage.
Her mum Caroline writes, “I don’t know what parenting of an average child feels like and I plan my life according to Amelie. I became a full-time carer and live in fear of the phone going. I used to go daily to school when she was on the meds as she didn’t tolerate them well and would always vomit. My life is Amelie and Amelie’s life is arthritis. We have planned everything around this disease...even down to planning for uni locally so she can stay at home and I can help her through her bad days.”
For more information about the different types of Juvenile Idiopathic Arthritis, please see our About JIA page.
* The photo is from stock and is not Amelie.