WHEN Eadie Glatz was 16 months old, she almost died.
Over a series of weeks, Eadie began to develop rashes, high fevers and a sore left wrist resulting in her stopping crawling.
Her mother, Aimee Howlett, rushed her to Bendigo Health but she was discharged after an X-Ray revealed no broken wrist.
"I thought I was going crazy," Ms Howlett said, "I'd be up with her with a fever in the night and then in the morning it'd be gone."
Eadie presented to the hospital again multiple times with hip stiffness and lameness and was prescribed intravenous antibiotics for a suspected viral infection.
After weeks in and out of hospital and several misdiagnoses, the one-year-old was finally diagnosed with systemic-onset Juvenile Idiopathic Arthritis (SoJIA) and was rushed to a specialist in Melbourne.
JIA is a little-known but highly common autoimmune disease affecting almost 1 in 1,000 children globally.
The immune system attacks the tissue surrounding the joints, often resulting in stiffness and swelling in young children.
While not life threatening itself, the disease has severe impacts on children's physical development.
Eadie developed a potentially fatal complication of the disease, called macrophage activation syndrome (MAS) which began attacking her internal organs.
Luckily, after a cocktail of corticosteroids and anti-inflammatory treatments, Eadie's flares were brought under control.
While a terrifying ordeal, the young girl's story is not isolated.
Despite being as common as Type 1 diabetes, JIA awareness is debilitatingly low, meaning hundreds of children go misdiagnosed each year.
An interim federal government report into Childhood Rheumatic Diseases was tabled in March after hearing submissions from across the country from medical associations, doctors, families and children.
Across the 127 submissions, the desperation for more awareness and funding for the disease was glaring.
Eadie's paediatric rheumatologist Dr Georgina Tiller is one of only ten full time consultant paediatric rheumatologists in the country.
"One overarching issue is that there is a nationwide shortage of healthcare workers with expertise and training in paediatric rheumatology," she said, "rheumatic diseases in childhood, despite their frequency, are still under-recognised."
The lack of recognition of the disease means affected children often face years of misdiagnosis, with symptoms often being dismissed as growing pains or viral infections.
One families' submission to the inquiry outlined their son's two-year long diagnosis journey.
"We took our son to two different GP's and an orthopaedic surgeon (for a suspected knee tumour), before being referred to a paediatric immunologist for a diagnosis of childhood rheumatic disease and then onto a paediatric rheumatologist for ongoing care," it read.
By the time the child was diagnosed he was four-years-old and was facing long-term health issues.
The reality of a delay in diagnosis meant the child now faces long term disability.
"This unacceptable amount of time before diagnosis meant our son ended up with a leg length difference and damage to his left knee joint, muscle wastage in his thigh muscles from his altered gait and damage to his wrist and thumb joints," the family told the inquiry.
In another submission, a group of six trainee paediatric rheumatologists told the inquiry training opportunities were also highly limited.
"All the trainees who will complete their training within the next 18 months have had to move either interstate or overseas (often both) to meet training requirements," they said.
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For most patients, the journey to a diagnosis is long and convoluted, but the barriers to treatment don't stop there.
Children in regional areas are forced to travel to see one of the ten specialists across the country, meaning not only a delay in diagnosis but often a delay in treatment.
Despite nearly one-third of Australia's population living outside major cities, almost no publicly funded paediatric rheumatology services are available outside capital cities, including no specialists in Tasmania, the Australian Capital Territory and the Northern Territory.
The inquiry heard parents were taking significant amounts of time off work and children were missing weeks of school at a time, simply for check-up appointments.
The financial burden on families is also notable, as families navigate travel costs and complex medication access.
One family told the inquiry due to lack of availability they had to get their son's anti-inflammatory medication compounded in Brisbane, meaning what would normally cost six dollars now cost them $55.
Like all children and families that suffer from chronic illness, the emotional toll of JIA is also significant.
Eadie's mother, Aimee Howlett said the experience had been isolating.
"It was quite lonely in the sense of not having anyone at that same stage of having a sick kid," she said.
"I had this expectation of what I could do with my child and I just had such a different experience to other parents because she was so unwell."
A submission to the inquiry from the Australian Association of Psychologists called for an increased medicare rebate for psychologist appointments in order to more effectively manage the mental health toll of the disease.
At the moment, the two-tiered medicare rebate model provides higher rebates for clinical psychologist's clients (currently $128.40 for a 50- minute session) and a lower rebate for the clients of all other registered psychologists.
"There is no evidence to support that clinical psychologists are better skilled at providing services than other psychologists," AAPI told the inquiry.
AAPI said regional areas were under-serviced with mental health support, and often regional patients did not have a choice between clinical and other psychological support.
A significant proportion of the 127 submissions called for a Multidisciplinary Team (MDT) approach, arguing rheumatologists themselves were not equipped to deal with the mental health toll and the allied health needs associated with the complex disease.
Following the inquiry, the report handed down its recommendations last month, including increasing training programs to triple the number of specialists by 2030 and dedicated psychology services in all Australian paediatric rheumatology units.
While Juvenile Idiopathic Arthritis is - by nature - a childhood condition, it can return later on in life, and patients often continue to deal with the side effects, including mental health concerns - well into adulthood.
However, with the right treatment plan most children enter into remission in their teens.
Several adults told the inquiry of the fruitful lives they have lived after the disease, including a professional football player and a now qualified paediatrician.
After extensive treatment over the last two years, four-year-old Eadie is now in remission and has been unmedicated since December last year.
For Ms Howlett, her hopes for her daughter's future are clear.
"Now I just want for her what everyone wants," she said, "a normal life as possible."
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