Like most people, Rachel Glassford thought arthritis was a disease of the elderly. Until she was diagnosed with childhood arthritis.
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"If I used to have even a slightly warm shower, I'd come out and all my joints would be swollen and bright red and my parents thought, 'That's a bit weird'. We sort of didn't deal with it for a couple of years," she said.
Eventually after a trip to the GP, multiple blood tests and more than six months of waiting, Miss Glassford was diagnosed with psoriatic arthritis, aged 15.
She went from being an active, athletic child to feeling exhausted and in pain. "Even when I'm not in a flare, I do get a lot of pain day to day, and it's managed with medication. But it's not just that: it's the fatigue," she said.
As a teenager, she was too old for a paediatric rheumatologist and too young for an adult rheumatologist.
"I had no idea what was going on. I was going to all these doctors' appointments and just switching off because they were poking at my joints, and it was hurting so much. My brain had switched off because I was in so much pain," she said.
An unknown disease
Awareness of childhood rheumatic diseases like juvenile arthritis has improved since she was diagnosed, said Miss Glassford, now 22.
"I felt like a guinea pig because I had not met a single rheumatologist or doctor or specialist that had ever dealt with someone that young. Whereas now my little sister's got it and she's been diagnosed for probably four years and she's just about to turn 16, but she's seeing a paediatric rheumatologist. She has a couple of specialists that kind of know what they're dealing with. But even seven years ago, I felt like no one had heard of it," she said.
However, support is still limited for the up to two in 1000 Australian children who suffer from juvenile arthritis.
Rachel was rejected from a Centrelink disability pension and rejected for the the National Disability Insurance Scheme (NDIS) twice. "My arthritis isn't on the list of accepted diseases. Rheumatoid arthritis is but not psoriatic arthritis," she said.
"I'm currently living in Canberra on a part-time income, because I can't get any help from Centrelink, because I work more than 15 hours a week, so it is really tough. I do have to pay for all my medical bills and everything. I get money back for my rheumatologist from Medicare, but I still pay like $80 out of pocket."
Rachel is also unable to afford allied health professionals, like physiotherapists, and her weekly medication bills are significant.
Awareness and support is even harder in regional areas. Rachel, who grew up in Yass, had to hold off on appointments because she and her family were unable to travel to Sydney or Canberra.
Parliamentary inquiry
Arthritis Australia's national policy and government relations manager Louise Hardy said there was "variable access" to support for arthritis sufferers. Australia also did not have an adequate paediatric rheumatology workforce, falling short of the international standards.
"We want to see a comprehensive plan for the next government to address out-of-pocket costs. So there are changes that they could make in terms of safety nets that would be helpful.
"But really we need to see a bit of a comprehensive plan to address that, because it's an issue that's been going on for too long and the expenses are only getting higher for families," she said.
An interim report into childhood rheumatic diseases was tabled in federal parliament at the end of March, making 15 recommendations, including increased training programs to triple the number of paediatric rheumatologists in Australia by 2030.
The Standing Committee on Health, Aged Care and Sport also recommended establishing centres and clinics in major cities and regional areas to provide children with support and access to allied health.
"It is hoped that this report will lead to changes that will improve the lives of many Australian children and their families living with childhood rheumatic diseases, as the case for action is pressing, and should not wait until the next parliament is determined whether to complete a final and full report," said Labor MP Dr Mike Fastlander, deputy chair of the committee.