IT’S a common and widely held misconception: “kids don’t get arthritis”.
The reality is, that the condition effects more than three in 1000 children nationally, making it more prevalent than well-known paediatric conditions like childhood diabetes, cerebral palsy and cystic fibrosis.
Juvenile Idiopathic Arthritis (JIA), to give it it’s full name, causes pain and swelling in joints, increase fatigue and potentially affecting eyesight. Without diagnosis, the condition can cause permanent, irreversible damage and while some states provide extensive services and training on the condition for medical professionals, New South Wales is lagging far behind.
Through a lack of funding, the NSW government has allowed a crisis in the diagnosis and care of JIA patients to develop. In fact, today there are just two JIA specialists across the state, which is well behind the national standard and the likes of Victoria and Queensland which have six and five specialists respectively. Additionally, there is a significant lack of training for the wider medical community.
The effects of this can be seen in the time taken for families to get the answers they need. The average JIA patient spends 10 months struggling to be diagnosed from the onset of symptoms. In fact, four out of 10 (40 per cent) children with arthritis wait six months from symptom onset until diagnosis, and 15 per cent wait 12 months. It’s also common for these children to present with their symptoms to four or five different professionals before condition is even considered, showing that even health care practitioners think “kids don’t get arthritis.”
Beyond the identification of JIA, there are no funds available for education and wellness programs that will help children with the condition, such as those provided by Arthritis NSW.
Without donations, we would not be able to hold these much-needed activities that allow children to connect with others like them in a non-judgemental forum. Arthritis NSW runs a number of initiatives which are solely funded by public and corporate donations. These activities currently help just 45 children annually, that’s approximately 1.5 per cent of the JIA population of NSW. It’s simply not enough!
The pain and feeling of isolation that children with JIA feel may not be visible, but it’s time they were heard and governments provided funding for the care and programs they need.
Sandra Vincent is chief executive of Arthritis NSW. For more information on Arthritis NSW projects, or to donate, visit arthritisnsw.org.au