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Thousands of children living with chronic pain unable to access proper care

kid with CP smiling

Families of the more than 6000 Australian children suffering from Juvenile Arthritis (JA) have called 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.

On World Arthritis Day (October12), 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 has revealed that services for Juvenile Arthritis in Australia lag well behind other developed economies internationally, supporting parents’ experience.

Children with Juvenile Arthritis experience daily pain and physical limitations, are treated with strong immune suppressants and anti-inflammatory drugs, and 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 6 times more common than cystic fibrosis, however there is virtually no political or community awareness of JA, and alarmingly low recognition among health professionals.

Juvenile Arthritis Foundation of Australia Prof Ruth Colagiuri said, “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. 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. The TGA has advised tocilizumab (Actemra) will be in short supply until 2022.

Samantha Cooper, now about to turn 14, was diagnosed at 2yrs of age with systemic juvenile arthritis which causes inflammation of her internal organs in addition to her joints. Her father Wayne Cooper says, “Tocilizumab (Actemra) is critical to controlling Samantha’s inflammation and therefore her pain, overall functionality and wellbeing. Samantha’s next injection of Actemra is due soon but our pharmacist says the warehouse is empty and no-one can tell us when it will available again.”

World Arthritis Day (WAD) is a global awareness day held every year on 12 October. WAD aims to help raise awareness in all audiences across the world 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.

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