Tasmanian families forced to travel interstate for juvenile arthritis treatment

ABC NEWS (Australia)

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.

Transcript

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]

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