Juvenile arthritis is one of the most common chronic diseases affecting Australian children and is a painful and potentially disabling condition. Despite it's prevalence, Tasmania is the only state in the country without a permanent paediatric rheumatologist, forcing some families to travel interstate for treatment.
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00:00 I didn't know what arthritis was or what they were talking about, but now that I know what
00:07 it is, I wish I was pain free and felt normal again.
00:16 Harry Danock was just 10 years old when he was diagnosed with juvenile arthritis.
00:25 I haven't really told anybody yet, I've just told my teacher and my karate sensei.
00:32 I haven't even told my grandparents yet, because I don't really feel ready to tell people.
00:39 Harry had always been active growing up, obsessed with sport including running, swimming and
00:47 karate. So when he started struggling with simple tasks like holding a knife or using
00:54 a pen at school, his parents knew something wasn't right.
00:59 So it was really a turning point when we realised that we needed to get this looked into because
01:06 we simply couldn't hug him anymore. You go to give him a bedtime hug and he said it hurt
01:10 too much.
01:11 I brought Arthur Wrightous here today because he helps me a lot.
01:20 It took more than 8 months for Harry to be diagnosed. While there are treatments available,
01:26 there's no cure.
01:28 Harry's pain or discomfort, depending on the day, is his normal now. He's always fatigued,
01:35 but just as the physical condition affects him, there's certainly a huge mental impact.
01:44 Juvenile arthritis is a chronic, painful autoimmune disease that affects between 6 and 10,000
01:51 Australian children.
01:53 People do think it's a rare disease, but it's actually not rare at all. It's quite common
01:58 because that's about the same prevalence as diabetes in the same age group.
02:04 Life with juvenile arthritis can mean dozens of doctor or specialist appointments every
02:10 year.
02:11 Despite around 120 children having the disease in Tasmania, there's no permanent paediatric
02:18 rheumatologist. A small percentage is seen by an adult rheumatologist, others are forced
02:24 to travel to Melbourne.
02:26 The problem with that of course is that in between visits, when the child has an acute
02:31 episode, something goes wrong, there's no access to acute care.
02:35 I've always wanted to be a spaceman.
02:40 Government have joined forces with the Juvenile Arthritis Foundation Australia to urge the
02:45 state government to establish paediatric rheumatology services.
02:49 Health Minister Guy Barnett says the government is considering paediatric subspecialties as
02:54 part of this year's service planning activities, including paediatric rheumatology.
03:00 [BLANK_AUDIO]