Call for greater JA awareness

World Arthritis Day (WAD) is a global awareness day held every year on 12 October.

WAD aims to help raise awareness of the existence and impact of rheumatic and musculoskeletal diseases, often referred to as RMDs.

The debilitating effects of these diseases, of which more than 200 exist, are little known; their impact, however, is largely – and silently – felt.

This World Arthritis Day, families of the more than 6000 Australian children suffering from Juvenile Arthritis (JA) are reportedly calling for investment to provide proper services and support to give kids with the painful, inflammatory, autoimmune diseases a fighting chance for a full and pain free life.

The families are highlighting the scarcity of specialist services that are putting their children at risk of sub-optimal care.

Research undertaken by Sydney Paediatric Rheumatologist, Professor Davinder Singh-Grewal reveals that services for JA in Australia lag well behind other developed economies internationally, supporting parents’ experience.

Children with JA experience daily pain and physical limitations and are said to be treated with strong immune suppressants and anti-inflammatory drugs.

Due to this, it’s said children with JA are at high risk of permanent joint deformities and vision loss and miss significant time out of school through illness and the demands of treatment such a joint injections and ongoing infusions.

The prevalence of JA is similar to other serious childhood diseases such as juvenile diabetes and around six times more common than cystic fibrosis. However, it has been reported that there is virtually no political or community awareness of JA, and alarmingly low recognition among health professionals.

“Most people think arthritis is a disease of elderly adults but lack of awareness leading to late diagnosis of juvenile arthritis is consigning some children to a life of pain and permanent disability from irreversible joint and eye damage,” says Juvenile Arthritis Foundation of Australia Professor Ruth Colagiuri.

“With early diagnosis and access to specialist care and the right medicines such complications are imminently preventable. These kids deserve better – surely, we can do better for them.

“It’s heartbreaking to watch your child in so much pain they can’t even put their foot to the floor, let along walk or go to school. This is a daily occurrence for families with juvenile arthritis.”

In addition to daily challenges, families are now battling a shortage of a key medication due to its high global demand to treat Covid-19.

The TGA has reportedly advised tocilizumab (Actemra) will be in short supply until 2022.

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