IT CAME as a total shock to Liam and Lorraine Small when their perfectly healthy looking son Shane was diagnosed with juvenile arthritis (JA) at the age of four. They had never even heard of the disease which affects more than 1,000 children in Ireland, making it about as common as childhood diabetes.

It was even more of a shock when the Smalls discovered that Shane’s younger brother, Patrick, also had juvenile arthritis, as the disease does not usually run in families.

“Shane’s knee used to swell up quite badly and he had a visible limp but other than that, he looked perfectly normal and ran about like any other child his age. It was initially put down to a knock by his GP and specialist, but he was eventually diagnosed with JA. We had heard of arthritis but never heard of juvenile arthritis,” recalls Liam Small.

The Small family was fortunate that Shane (now eight) was referred to Dr Orla Kileen, consultant paediatric rheumatologist at Our Lady’s Hospital for Sick Children, Crumlin, at an early stage, who helped get his condition under control.

“We were advised that Shane should stop playing football and doing things like trampolining or going on bouncy castles, which is obviously difficult to try to tell a four year old. He was put on medication and had to get steroid injections when the pain got very bad.”

When Patrick (now five) was about three and a half, he started complaining of soreness in his knees and was also diagnosed with JA. His condition was not as severe as his brother’s and at his last appointment he was given the all clear by Dr Kileen.

“Shane also got on well at his last appointment and had his medication reduced. His JA is very much under control now and he hasn’t had a flare-up in quite a while. Shane’s arthritis seems to be restricted to his knee, thankfully, and had not spread to any further joints. They say that if arthritis is confined to one joint or limb in children, there’s a greater chance they will grow out of it,” says Liam Small.

Both boys also have hypermobility which is common in JA and means their joints are very bendy. This particularly affects Shane’s handwriting as his index finger is not strong enough to support a pen so he has to wear a support on his finger and needs a special keyboard for school.

“The advice now for children and adults with arthritis is to exercise and get the joints moving so we have been told to try Shane back in football and other team sports. As it turns out, he doesn’t have a huge interest in football but he likes cycling and swimming.”

The Smalls found Arthritis Ireland a great source of information and advice and through the organisation, they have met other children with JA and their families which they have found very beneficial.

A new survey carried out by Arthritis Ireland found that public awareness of JA remains extremely low. The most common response parents receive when they tell somebody that their child has arthritis is one of surprise that someone so young could have the disease.

Arthritis Ireland teamed up with some of Dublin’s top GAA football stars to launch JA Month and are calling for support for children with arthritis by selling Jasper pins which cost €2 each.

To mark JA Month 2012, the organisation has unveiled a brand new website ( juvenilearthritis.ie) to provide children, teenagers and parents with comprehensive information on JA and on the services it provides.

All of the vital services offered by Arthritis Ireland are financed by the selling of Jasper pins around the country during autumn.

To sign up to sell the pins or for more information, contact Arthritis Ireland on (01) 6470209 or email fundraising@arthritisireland.ie.

Arthritis Ireland's JA Family Day is at Dublin Zoo on Saturday, October 6th. To register, contact Young Arthritis Ambassador Laura Hickey on 01-6470208 or email lhickey@ arthritisireland.ie.