Engadine teenager meets PM while raising awareness of juvenile arthritis

Daman Cassar, 15, who is in year 9 at St John Bosco College, Engadine is among up to 10,000 children in Australia who suffer from juvenile arthritis.

The 13 children were welcomed to afternoon tea at The Lodge by Mr Albanese, his partner Jodie Haydon and senior ministers.

The Juvenile Arthritis Foundation Australia (JAFA) thanked Mr Albanese for his support for their efforts to raise awareness of the under recognised, debilitating disease and increase specialist treatment services.

Daman's mother Jo Cassar said Mr Albanese was obviously touched by what he heard.

Daman was diagnosed at the age of four after suffering pain in his knees, fingers and toes and, shortly after, the arthritis rapidly spread to almost all other joints.

"Daman does not know what it's like to live a life without pain," Ms Cassar said.

"For more than three years, Daman attended Sydney Children's Hospital every three weeks for a medication infusion, which meant time away from school and his friends.

"He had also had painful steroid injections into his joints to alleviate swelling and pain.

"His present treatment includes daily medication, fortnightly injections, physiotherapy and regular visits to a physiologist, paediatric rheumatologist and opthalmologist. Despite all this, his joint pain still flares unpredictably."

Ms Cassar said, as Daman wasn't eligible for biologic medication early in his course of disease, his thumb and wrist joints were irreversibly damaged, which makes writing and fine motor skills incredibly difficult, and will require joint replacements in the future.

A parliamentary inquiry this year into the shortage of specialist services for juvenile arthritis cases found there were just two paediatric rheumatologists in the whole of NSW.

"We urge the government to consider implementing the inquiry's 15 recommendations in 2023," Ms Cassar said.

JAFA's founder, Associate Professor Ruth Colagiuri, said a diagnosis of juvenile arthritis could occur as early as 12 months of age.

"Much of the burden could be avoided by earlier diagnosis and referral to specialist services," she said. "This would ensure that no child remains undiagnosed until they develop disabling joint complications and loss of vision."