Chelsea Parker has become this year’s poster child for juvenile arthritis with media clamouring to hear her story as she graduates from Camp Footloose, run each year by Arthritis NSW (ANSW).
Now 18, Chelsea will transition into a camp leader position next year but as an ‘old hand’ at the camp experience she’s been interviewed by ABC Radio and also has profiles coming up in ANSW’s quarterly magazine and newsletter.
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Although not formally diagnosed with Juvenile Idiopathic Arthritis (JIA) until she was 13, Chelsea had a history of swelling around her knees, sore muscles around her joints, and bones grinding against each other.
Now 18, from the age of eight Chelsea had trouble with her right knee. Crystallisation of some of the fluid collecting around it led to a cancer scare (there’s a family history) and the abnormality was removed in an operation.
By the time she was attending Tenterfield High School, however, the other knee was also playing up.
Once diagnosed with JIA she said it took awhile to sort out the best medication regime for her condition. Some have side effects such as sun sensitivity, which had affected her participation in school sports, for instance.
She sees a Toowoomba specialist every three months and her medication continues to be tweaked, including the addition of a new biomedical medication on a trial basis this year to help with the swelling.
Pain is her constant companion but she said she has good days and bad. She receives steroid injections when the pain’s particularly severe but the last round didn’t help at all.
She’s currently on a cocktail of three different medications plus folic acid and panadol, and accepts it’s a lifetime management challenge. That’s why she looks forward to Camp Footloose each year, when she can enjoy a week spent with other JIA children without feeling self-conscious about the restrictions the condition imposes.
This year the camp was held at the Sydney Academy of Sports and Recreation at Narrabeen, with activities like archery, raft-building and the ‘leap of faith’, each modified as necessary to accommodate the participants. And whereas those staying at the academy would normally walk from one side of the campus to the other, the JIA campers instead had motorised buggies to get from one place to another.
Around 30 children participated in Camp Footloose this year, ranging in age from nine to 18. As a veteran camper Chelsea was assigned a young camp sister, an experience she really enjoyed.
The severity of their condition also varied. Chelsea loves the supportive environment of the get-together, making connections with other sufferers than she can lean on for support on the bad days.
It’s a contrast to her school days when she often struggled to keep up with activities.
“This is my ‘year camp’,” she said, and can’t wait to return as a leader next year.
Some children grow out of their arthritis, but Chelsea doesn’t have that form of the disease and knows that her condition will always have to be taken into account in her life decisions.
Next year she’ll be forced to progress to a car with automatic transmission as her knees can’t handle the manual car for much longer. She has chosen a career path that she hopes won’t put too much strain on her joints.
Chelsea is doing a business degree with Southern Cross University in Lismore, majoring in tourism and hospitality management. This semester, however, she’s doing a couple of subjects at home via distance education after her knees flared up again.
She’s hoping to transition into a Conventions and Events specialisation, and can see herself working at a convention centre in the future. In the meantime, however, she can often be found at the family business Sullivan’s Newsagency as she looks forward to what the next Camp Footloose holds in store.
