JAFA has declared 18-25 March 2023 as Australia's first Juvenile Athritis Week
The theme is inequality: social, geographic, educational, financial and the shortfall in services for the up to 10,000 children with juvenile arthritis and childhood rheumatic diseases compared with those for other similar chronic kids’ diseases.
Because kids with arthritis deserve better.
Children and young people with arthritis and rheumatic diseases can suffer social isolation resulting from their physical limitations.
Social isolation and the demands of care are a source of mental ill health for parents and siblings as well as for the affected child.
Rural and remote families incur frequent, long and costly travel to access the treatment their child needs.
Geographic isolation also means the child and family have little or no access to peer support.
Many children with juvenile arthritis and other rheumatic diseases are discriminated against or left behind at school.
It’s hard to learn when you’re in pain or can’t do what other kids can, such as sit on the floor or hold a pen properly. Or when you take lots of time off school for treatments, side effects, appointments, and illness.
Time off school equals lost education. Time off sport and play equals isolation.
Juvenile arthritis and childhood rheumatic diseases place a heavy financial burden on families in out-of-pocket expenses.
Many parents reduce their employment or take unpaid leave to care for their child. This means reduced income for them and lost productivity for the economy.
The cost of having a child with these diseases means some families must either forgo other essentials or not access the services their child needs.
Services and support for children and young people with juvenile arthritis and their families are grossly under-funded compared with other serious and common chronic childhood diseases. Lack of access to specialist treatment and care can lead to permanent joint and eye damage.
There are no paediatric rheumatologists in Tasmania, ACT or Northern Territory, and only a handful in other states.