Radio star Chris O’Keefe has revealed a hidden childhood battle with juvenile arthritis, which he said consigned him to a wheelchair at times as every joint in his body was “inflamed”.
The popular 2GB radio host opened up about his battle with the debilitating disease alongside fellow sufferer Lucy Mathewson, 14, Ruth Colagiuri from the Juvenile Arthritis Foundation and NSW Health Minister Ryan Park, who has announced a $6.9m funding boost into juvenile arthritis in Tuesday’s state budget.
“By the time I was 14 or 15, I was finally in remission and I’ve hardly had a problem since then that was 25 years ago,” Mr O’Keefe said.
“And guess what, in terms of being able to treat this thing, things haven’t got much better in terms of the resources across NSW.
“Do you know how many pediatric rheumatologists there are right now in the state of NSW? Full time pediatric rheumatologists in the public system?
“How many would you think? One. Yep, a single doctor. That’s all there is to treat kids with arthritis. This for a disease that 10,000 Australian kids under the age of 16 are struggling with. It is clearly inadequate.”
Lucy told listeners she has suffered from arthritis pain since she was a baby.
“I couldn’t get up on my cot,” she said.
“I was struggling to walk downstairs and my parents realised and they decided that they needed to figure out what was wrong with me because it was obviously not our growing pains or it wasn’t something that was normal.
“So I was taken to a doctor and it took them over six months for me to be diagnosed fully.”
Even now, the pain of the disease damages Lucy’s life.
“It has been it’s been really hard for me to keep up with my peers because I can’t do a lot of things that they can do,” she said.
“It has been hard with the pain management with schoolwork and honestly just focusing and it’s just been really hard for me to adapt to this and live a normal life.”
Mr Park said the $6.9m would fund an additional six senior clinicians to deliver improved access to highly specialised care and ongoing monitoring for children with juvenile arthritis in NSW.
This will include two pediatric rheumatologists, a highly specialised allied health team for a statewide service and a paediatric rheumatology advanced trainee position.
“Juvenile arthritis can be debilitating for people who are living with it and this investment means more children will be able to access the specialist care they need through the statewide paediatric rheumatology service,” he said.
“Eighty per cent of children with juvenile arthritis experience pain daily, which can directly negatively impact their education and participation in physical activities.
“This is a critical investment, the earlier we can diagnose and treat juvenile arthritis the better the outcome for the patients, and reduced risk of permanent disability.”
Ms Colagiuri told Mr O’Keefe she thought the $6.9m allocation would bring the treatment for juvenile arthritis “out of the dark ages and into the light”.
“It’s miraculous,” she said.
“I’m going to burst into tears.”