Juvenile Arthritis Foundation Australia (JAFA)
Chronic Childhood Disease Lowers Quality of Life
An early diagnosis of juvenile arthritis could save children from lifelong disability due to joint deformities and loss of vision, according to experts who are campaigning for better recognition of this common disease.
In Australia, an estimated 30,000 children and young adults under the age of 24, are living with juvenile arthritis (JA), a painful disease that restricts simple daily activities and overall quality of life, often leading to social isolation and educational disadvantage. 1,2
Despite being one of the most common chronic childhood diseases, awareness of JA remains so low, even among healthcare professionals, that some children already have permanent joint and eye damage by the time they are diagnosed.2
The Governor-General, Her Excellency the Honourable Ms Sam Mostyn AC, is helping to lift the veil off this under-recognised childhood disease by becoming Patron of Juvenile Arthritis Foundation Australia (JAFA) and hosting families at Government House in Canberra during this year’s Juvenile Arthritis Week (16-23 March).
“I have accepted patronage of JAFA to help shine a light on juvenile arthritis. As Patron, I stand alongside these brave and resilient children and their families. I look forward to supporting JAFA as they raise greater awareness to support earlier diagnosis to achieve better outcomes,” the Governor-General said.
Alice Hill, mother of seven-year-old Charlie Walter, who was diagnosed with JA at the age of four, highlights the issues around delayed diagnosis, saying “The road to diagnosis for Charlie was painfully slow. Our experience highlights the desperate need for more funding to train healthcare professionals in recognising the signs and to provide more rheumatology teams to deliver the specialised care that children with this condition deserve.
“For Charlie, diagnosis was the beginning of a significant improvement in quality of life, for him and the rest of the family. There are still many ups and downs, but we are reassured knowing that he is now receiving specialist care. We hope that in the future, other children with juvenile arthritis are diagnosed faster to minimise the significant impact this condition has on quality of life,” stated Ms Hill.
JA is a painful and incurable inflammatory autoimmune condition that primarily affects the joints, but can also impact the skin, eyes, muscles and internal organs. Approximately 80% of children with JA experience daily pain, often leading to a significant burden of disability and long-term health challenges. 2
The condition significantly impacts not only physical health but also mental and emotional well-being:
The burden of JA extends beyond the affected individuals to their families. Parents often face emotional stress, financial strain and lifestyle adjustments as they navigate their child’s chronic pain and healthcare needs.2
According to Dr Jeff Chaitow, leading paediatric rheumatologist and Chair of JAFA’s Medical and Scientific Panel, there are two main reasons why early diagnosis and early intervention are vitally important.
“The first reason is that it does not prolong the pain and suffering of the child with undiagnosed disease. The second is that with the major advances in treatment, early diagnosis and treatment minimises potential long-term damage to the joints and has an improved long-term outcome for the child,” said Dr Chaitow. JAFA’s founder, Professor Ruth Colagiuri AM, said “JAFA is working hard, through its federally-funded early diagnosis program, to support health professionals to recognise and refer juvenile arthritis early and reduce the current average delay from 10 months to 10 weeks. We must rescue these children, and their distressed parents, from the misdiagnosis merry-go-round and get them onto treatment early to give them the best possible chance at living their best possible lives.
“JAFA sincerely thanks the Governor-General for her invaluable assistance in raising awareness of this under-recognised childhood disease.”