WHEN Crystal Sammons made the decision to take her 19 month old daughter Keelie to the doctor with a swollen knee, she thought she was making a precautionary visit after a fall.
But soon after returning home, Ms Sammons noticed her daughter’s wrist had “blown up”. Doctors at Wyong Hospital ruled out an insect bite and sent young Keelie for a bone density scan, MRI and biopsy.
“We thought the worst,” said Ms Sammons, of Cooranbong.
“When they said they were going to do a biopsy and look for cancerous cells we were worried.
“When they told us it was arthritis there was initially a bit of relief – but the next thing was, well what do we do now?
“We’d had a family member who is a midwife say to us ‘It sounds like juvenile arthritis’ and we’d said ‘You’ve got to be kidding – kids don't get arthritis’.”
Keelie, now 10, has been participating this week in Camp Footloose, Arthritis NSW’s five day program held in the lead up to World Arthritis Day, on October 12.
The program encourages children with arthritis to gain a sense of control over their painful and often debilitating condition through sharing experiences, such as rock climbing, kayaking, archery and raft building, with others with the same condition.
Keelie has arthritis in her right wrist, right knee, right middle toe and left ankle, which sometimes affects her ability to run with friends or write for long periods in class.
“It’s hard to explain so it gets really annoying sometimes trying to describe it because people don’t understand it,” she said.
“You can’t see it, so it doesn’t make sense to them.
“Being at camp makes me feel more comfortable.
“I don’t have to worry about trying to explain because they know how it feels.”
Arthritis NSW said one in 1000 children have the condition.
Symptoms include pain, swelling, tenderness, stiffness and warmth around the joint area.
Joints can be permanently damaged.
Ms Sammons said there was still a lack of awareness about the condition and that it can affect all ages, as well as many unanswered questions about why.
“We still don’t know how you get it, if it’s genetic, what it is caused by and if something predisposed her to it,” she said.
“It’s a silent condition and people used to say ‘Well she looks fine’.”
Keelie hasn’t required steroid injections to reduce the fluid in her joints for more than two years, but uses painkillers, heat packs and cold packs depending on her discomfort.
She has regular appointments with a doctor, physiotherapist, occupational therapist, paediatric rheumatologist and ophthalmologist.
“She’s constantly fatigued and one day can be very different to the next,” Ms Sammons said.
“She plays netball in winter and we’ve noticed this year that she plays better on cold mornings because she has to keep moving to keep herself warm and so she doesn’t stiffen up.
“But when they ask who is interested in whatever sport is happening at school she puts her hand up and does her best.
“She’s determined she can do it all.”