'Illness won't hold us back' (From Bradford Telegraph and Argus)

'Illness won't hold us back'

9:01am Wednesday 16th February 2011 in Health Features By Sally Clifford

Easing herself into a backward roll, Zoe-Ann Kelly shows her defiance to a condition more commonly associated with older people.

Zoe-Ann is one of a handful of youngsters suffering from systemic onset idiopathic juvenile rheumatoid arthritis, a debilitating condition affecting the bone structure and immune system.

Zoe-Ann has suffered with the condition since she was seven months old, but she’s determined it won’t hold her back.

She loves animals and is often in the saddle – riding her neighbour’s pony is one of her favourite hobbies when she isn’t at home with her two sisters, Kirsty, 16, and 18-year-old Stacey, and their pets.

The family menagerie includes a bearded dragon lizard, three cats, a cockatiel, two guinea pigs, a dog, and some fish.

Zoe-Ann’s pets are a comfort to her on the days when her arthritis takes its toll. Only someone who suffers from such severe arthritis pain can understand how painful it is.

The 11-year-old may look agile as she moves around the living room of the family’s Bradford home. Today is one of her good days. Advances in medical treatment of the disease have enabled sufferers like Zoe-Ann to enjoy the movement most of us take for granted.

Intravenous infusions of the drug Infliximab enable Zoe-Ann to cope with the pain of her condition. Zoe-Ann also has regular physiotherapy and blood tests, and she visits specialists every three months to check her progress.

But to Zoe-Ann, this has been part of her life from her diagnosis at nine months old. Her mum Suzanne and dad Stephen recall her being a poorly baby.

Her problems were initially put down to a chest infection. Too young to communicate that she was in pain, crying was the only thing Zoe-Ann could do. “She screamed every time you moved her,” recalls Suzanne.

Suzanne recalls her relief when medics finally found what was wrong. “At least we knew what it was,” she says.

Zoe-Ann had to rest her legs in splints to help ease the pain, and from being a toddler she has tried various arthritis treatments.

Being diagnosed so young, Zoe-Ann doesn’t know any different. “She doesn’t know what the fuss is about,” says Suzanne.

Considering the extreme pain she suffers, her family says she copes well. And she is aware of her limitations. She attempted karate, but wasn’t physically able to cope with the fighting.

Her immune system is also affected by the condition, which means she is susceptible to infections.

“She can be full of energy one minute, then can’t move and has to sit and rest,” says Stephen.

The family receive regular information and support through Arthritis Research UK.

Founded in 1936, it funds research into juvenile arthritis with the aim of finding better treatments and, ultimately, a cure.

“You don’t expect a little child to have arthritis. It’s not something you can see. To everybody else she is just normal,” says Suzanne.

Jack Jenkins was two when he was diagnosed with juvenile arthritis.

“He was walking like a little old man, and in a morning when I got him up, he would sit and cry and couldn’t walk. It took him a few hours before he got mobile,” says Jack’s mum Denise.

“As a parent, you’re frantic because they can’t tell you how they are at that age. We had lots of trips to the doctors, and he was referred to St Luke’s Hospital.”

A physiotherapist suggested Jack could be suffering from arthritis after Denise mentioned his morning stiffness. “She was right – they confirmed it by ultrasound scan,” says Denise.

It took Jack’s family time to get their heads around the diagnosis.

“We were devastated. We got the diagnosis as he turned two, but he couldn’t tell me things. You fight very hard for them when they’re that age,” says Denise.

She says Jack and the family are supported by an excellent team at Leeds General Infirmary.

Through the hospital, Denise became involved in Arthritis Care, a young people’s and families group which offers information and support to sufferers.

Like Zoe-Ann, Jack is also on Etanacept and visits his specialist every three months.

He loves sport, particularly football, and has been a member of Bingley Juniors since he was six. “He does table-tennis, badminton and football. He embraces any sport,” says Denise.

Jack is now 14 and still living life to the full, says his mum. “He copes with it really well. People don’t look at him and brand him as having arthritis,” says Denise. “He thrives on the positives – the things he can do. He lives life to the full, and why not?”

Denise’s advice to other parents whose children have been diagnosed with arthritis is to be positive. “You have got to let your child get on with their life. You’re there to support them and help them as much as you can, but you can’t keep them wrapped up in cotton wool,” she says.

Juvenile idiopathic arthritis – or JIA – affects around 15,000 children and teenagers in the UK – one in every thousand – and causes inflammation, pain and swelling in the joints.

Also known as Still’s disease, systematic JIA accounts for one in ten cases and affects the whole body, not just the joints. It often starts with a persistent fever or rash and can be difficult to diagnose.

Babies as young as six months can develop JIA.

l To find out more about Arthritis Care young people and families support group, call 07886 293473. For more information on juvenile idiopathic arthritis and other types of arthritis, visit arthritisresearchuk.org, or call (01246) 558033.