Bondi’s swim helps launch national register

A SURF Coast resident is reflecting on her advocacy with pride after playing a key role in a newly opened national register for a rare and painful disease.

Thirteen-year-old Torquay resident Bondi Condon made a trip to Parliament House in Canberra last month to attend the official launch of the Juvenile Arthritis Registry.

The registry is a partnership between Juvenile Arthritis Foundation Australia (JAFA), the Australian Paediatric Rheumatology Group and the Australian Arthritis and Autoimmune Biobank (A3BC).

The key objective of the registry is to gather information about juvenile arthritis and have a dynamic national registry to provide accurate information, and inform efforts to secure improved services for children and young adults with JA and childhood rheumatic diseases.

Ms Condon, who has had juvenile arthritis since age four, decided to make a difference in 2021.

“We raised $23,000 for Juvenile Arthritis Foundation Australia (JAFA) by swimming a lot of kilometres over the year of 2021,” she said.

“I swam 253 kilometres and the money we raised went towards getting the registry up and it finally has.

“It’s an incredible achievement by so many to get the register to finally launch. You can check this all out on Facebook page ‘Jump in and swim for Bondi’.

Bondi’s mother Leslie was extremely proud to see her daughter deliver her speech at Parliament House.

“She has really taken this challenge on.

“She is in pain on a daily basis, so to swim the distance she swam and to continue raising and maintaining awareness for a disease that had no solutions for its patients, was a really proud moment for us as a family.”

Bondi lives with JA in one of her knees and has experienced pain flairs on a regular basis in her ankles, jaw, and eyes in the 10 years since she first developed the condition.

To cope with the pain, Bondi receives steroid injections as a young child, but has recently stopped taking medications, using an osteopath as an alternative remedy method and maintaining a healthy diet.

“The trip also provided a chance for Bondi to meet other children that suffer from juvenile arthritis and connect with them. For her to become a support resource for some of the younger kids was super special,” Leslie added.

JAFA founder Ruth Colagiuri said the disease is one of the most common chronic childhood diseases and affects up to 10,000 children in Australia.

“Despite this, and the fact that these children have debilitating and painful symptoms, there is very low recognition and understanding of their situation,” Ms Colagiuri said.

“Most of us know an adult living with arthritis, but not many people appreciate the fact that the disease can hit children and cause heartbreaking symptoms.

“Inflamed joints can mean children are unable to walk, play sport or even hold a pen.”

For more on juvenile arthritis and the newly opened register, head to www.jafa.org.au