'You're hurting me': Delays in diagnosing juvenile arthritis hurt kids

When Pia Walker was limping because of a sprained ankle, her little shadow, two-year-old Hazel, also began to hobble.

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Hazel was limping on the same side as her mum, but within days it became obvious that it wasn't part of a game.

Hazel Walker, 5, Yass, has been diagnosed with juvenile arthritis. Pictures supplied

In the mornings, Hazel began crying when her parents lifted her out of bed.

"She'd complain 'you hurt my knee, you hurt my ankle, you're hurting me'," Mrs Walker said.

After ruling out a fracture, the Yass family's GP referred Hazel to a physiotherapist, who immediately suspected juvenile arthritis.

Within 24 hours of the GP receiving a blood test result, Hazel was seen by a visiting paediatric rheumatologist at a fortnightly clinic in Canberra. A day later, she was in Sydney receiving steroid injections in her knees, ankles and other joints.

"Within 12 hours of having those injections, she was much more comfortably running and jumping. It was a little bit of a whirlwind but great," Mrs Walker said.

Hazel Walker, 5, of Yass, Picture supplied

Goulburn resident Rachelle Allen had to wait much longer to get a diagnosis for her daughter Sofia, who began walking aged 10 months but soon began experiencing pain which kept her awake at night crying.

Repeated GP appointments and a visit to a sleep clinic did not identify the autoimmune disease.

It was only when Mrs Allen was pregnant with her second child that an observant midwife and obstetrician realised what might be going on.

When Mrs Allen mentioned her daughter's symptoms during an antenatal appointment, the clinicians decided to have a quick look at Sofia, who was also at the appointment.

"They started examining her, and they kept looking at me, and I was getting a bit concerned ... and they said, 'look, we think you should take her to a rheumatologist.'

Sofia Allen, 13, of Goulburn. Picture supplied

Despite her family's best efforts, it was weeks before Sofia saw a rheumatologist and treatment began when she was about 16 months old. She was lucky that delayed diagnosis didn't lead to permanent joint and eye damage.

The Juvenile Arthritis Foundation Australia is expanding a national early diagnosis program, aimed at helping GPs and other professionals to identify possible signs of the autoimmune disease and make prompt referrals to specialists.

Paediatric rheumatologist Jeffrey Chaitow, who sees patients at all three NSW children's hospitals, said a "stiff, swollen and sore", joint could point to possible juvenile arthritis.

Dr Chaitow said his patients included teenagers who were state and national-level athletes, but early diagnosis and treatment were essential.

"If the disease is well controlled they will live very active and normal lives. If it's late to diagnose they may have the effects [such as] joint damage and joint contractures, or worse still - visual problems," he said.

Now five, Hazel will start primary school next year, does gymnastics and enjoys running around, climbing and riding her bike.

Sofia, 13, is an accomplished district-level swimmer and loves the outdoors.

"I love water skiing and tubing in summer and I ride my dirt bike in winter and enjoy walking my dogs,'' she said.

A range of medications are used to reduce inflammation and manage pain and Hazel and Sofia require regular juvenile rheumatologist appointments and eye tests. Despite the challenges, they are both managing to thrive.

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