Paediatrics: Over 4,500 children in Ireland are suffering from undiagnosed juvenile arthritis, according to the chief executive of Arthritis Ireland, John Church.
The fact that the Republic currently has no paediatric rheumatologist, the specialist qualified to treat children with arthritis, is just one reason for this, said Mr Church. While the appointment of the Republic's first paediatric rheumatologist has been approved, the position will not be filled until April 2006 in Our Lady's Hospital for Sick Children in Crumlin, Dublin.
"Research in Britain and the US has shown that one in 1,000 children suffers from juvenile arthritis. This figure wouldn't vary from climate to climate, so we estimate that as only 600 children in Ireland have been diagnosed, over 4,500 have not been diagnosed," said Mr Church.
The longer a child goes undiagnosed with arthritis, the greater the chance of long-term damage.
Adrienne Duffy's six-year-old daughter, Zoe Duffy-Connolly, was diagnosed with juvenile arthritis 18 months ago. The family live within a few minutes of Crumlin hospital, which has been a blessing, said Adrienne, who first noticed something was wrong with Zoe when she started complaining about pains in her legs. "I didn't really think anything of it because she is a very active child," she said. When Zoe couldn't stretch properly or walk up and down the stairs the following week, she brought her daughter to the doctor, and was soon referred to Crumlin where Zoe was diagnosed with oglioarthritis, the most common form of arthritis in children.
"It was so hard to understand. I didn't know children could get arthritis," said Adrienne. From the beginning, she was truthful with her daughter about her condition, and up until eight months ago, Zoe was very sick and, at one stage, wheelchair-bound.
"It is hard," said Zoe. "When I get sore arms, neck, hands, knees and ankles. I'm sore in my knees at the moment," she added. Zoe's arthritis has greatly improved since the start of the year, said Adrienne, thanks to a new drug. "It's great to see her running, playing and laughing again."
Adrienne said her family has been extremely lucky. "My heart goes out to the families who have to travel miles up and down to Dublin. It's so unfair. I know some children who had to get joint replacements because they weren't diagnosed in time."
"The paediatricians in Dublin's two children's hospitals, Crumlin and Temple Street, have become the specialists in the area of juvenile arthritis. Although there are rheumatologists and paediatricians all over the country, many people still have to travel with their children to Dublin to get treatment for juvenile arthritis," said Mr Church.
A paediatric rheumatologist in Crumlin was not sufficient: specialists were also needed in the west and south of the State, Mr Church added.
Doctors do not know what causes arthritis in children. With the right management, most children with arthritis can lead independent, active lives. The symptoms differ from child to child, but commonly include swollen, stiff and inflamed joints. Although there is no cure for arthritis in children, many children's symptoms will disappear provided they receive the correct treatment, exercise and diet.
As there is no state-funded service, last year Arthritis Ireland established Jump Around, a support and information group for children with arthritis, their families, carers and friends.
Jump Around has produced three booklets explaining juvenile arthritis aimed at children, parents and teachers to be distributed in clinics. The group hopes to later distribute the pamphlets in schools and to compile a new specific booklet for GPs.
On September 24th, Jump Around is having a day out at Dublin Zoo. The children will be entertained while the parents meet medical experts who will advise them on ways to take care of their children. Adrienne, who is on the Jump Around committee, has received invaluable support from other parents in the group. "It's great to be able to share things."
For information on juvenile arthritis, contact Gráinne O'Leary of Jump Around on: 01 661 8188