15-year-old Miriam lives with her family in southern NSW. She was diagnosed with Psoriatic Arthritis three years ago after 12 months of tests and specialist appointments. The condition lives in her jaw, wrists, fingers, knees and ankles.
Miriam’s high school has taken a troubling amount of time to recognise her condition and make adaptations to support her. She was once forced to run a 200m race because the relief teacher didn’t believe she had arthritis. Writing for too long is difficult. She experiences pain and fatigue from using the stairs and sitting on hard wooden chairs. However, she is unable to rest and then resume her classes, as it is school policy for any child who visits the sick bay to be taken home. She has missed a lot of school this way.
Luckily, she has a supportive family. Miriam’s parents manage her doctors’ visits, medication, their life at home and her school disruptions. They even keep the house at a constant 20 degrees in winter as her joints will seize up if it’s too cold.
Last year, Miriam attended Camp Footloose, Arthritis NSW’s camp for nine to 18–year–olds with juvenile arthritis. Normally a five-day event, Footloose 2020 was held over one busy day of canoeing and archery with lots of laughter and sharing. Since that day, Miriam hasn’t looked back.
‘Since Camp Footloose, I’ve felt better about living with my arthritis, and knowing I’m not the only one with it,’ she said. ‘We shared how our condition affected us and how we deal with it. It was good to talk to other kids who are going through what I do and understand. I had fun and made good friends with one of the kids. We’ve kept in touch. She and her family came to visit mine at Christmas, which was great.’
Miriam’s mother Deb agreed. ‘She is much more positive and happier in herself since Camp Footloose,’ said Deb. ‘She loved that the activities were all geared towards people with arthritis, as she has to sit out the sports and carnivals at school. She also made a great friend at camp, and they can’t wait to see each other again. She’s looking forward to the next Camp Footloose, especially if it’s longer than a day camp.
We agree with Miriam and plan for Camp Footloose 2021 to run for the full five days.
YOU can help Miriam and others with juvenile arthritis to take part in the camps program and move forward with more confidence and new friends by donating to our Winter Appeal 2021.