WHEN Annalise Owens went to the doctor for a swollen, sore hand as an eight-year-old - the last thing the family was expecting was a diagnosis of juvenile idiopathic arthritis (JIA).
There had been a bit of an incident at school earlier that week in which her hand had been bent back forcefully, so they had assumed it may have been fractured.
Instead, it was the beginning of a long and painful journey that has highlighted how little research there is into arthritis in all its forms, Annalise's mother, Ashley Owens, told the Newcastle Herald.
The Cameron Park family is raising awareness of a landmark report released by Arthritis Australia this week, which shows that despite being one of the most costly and expensive diseases impacting 3.6 million Australians, it has one of the lowest levels of research funding of all chronic health conditions.
"This is a auto immune disease that can affect nearly every part of the body," Mrs Owens said. "And there's no cure. There's treatment for it, but not necessarily treatments that are great for everybody.
"Nobody's actually got the answers. Nobody can really tell you how, what, or why it's there, how it comes about that some people get it, and others don't."
Now 13, Annalise struggles to write at school for long periods of time, and often needs to sit out of school sport. She also struggles with the lesser known effects of arthritis, such as impacted sleep, extreme fatigue and brain fog.
Mrs Owens said they began with steroid injections, and had tried different medications since. In the early days, she remembers her daughter sitting on the floor of her bedroom, in tears, due to severe pain.
"She has quite a high pain threshold, so she doesn't often break down in tears. She's been more the other way.... So when it actually happens, you know that something's not right," Mrs Owens said.
Mrs Owens, a nurse, would love to see more research into the mental health side of living with the ongoing, prolonged pain of arthritis.
"Regardless of whether your symptoms are mild or extreme, there's still that element of living with regular pain or discomfort - and that can get people down," she said. "Annalise has often asked me, 'Am I going to have this forever?' And I never know what to say. There needs to be more research into this so that we have those answers."
Arthritis Australia chief executive Jonathan Smithers said their report showed arthritis was set to become the next big health crisis.
"For every person living with arthritis or a musculoskeletal condition, the government spent less than $6 on research through the NHMRC in 2021, compared to $147 per person living with dementia, and $85 per person with a cardiovascular condition," he said.
"This report confirms we urgently need to improve our focus and care - by bringing research investment up to the level of other diseases like heart disease and cancer, and listening to the voices of people living with arthritis."
