How does a boy live with arthritis?

Nine-year-old Justin Edgar-McNerney was diagnosed with Juvenile Idiopathic Arthritis (JIA) at Great Ormond Street Hospital (GOSH) at the age of five and since then he and his family have been on an emotional rollercoaster.

When Justin started limping and said his knee felt a bit strange in November 2002, his parents Victoria Edgar and Patrick McNerney assumed he had twisted his knee playing football or riding his bike.

But on a trip to New York over Christmas Justin's symptoms worsened to the point where he was crippled and could not get out of bed in the mornings. More joints became involved and a doctor in New York made the tentative JIA diagnosis, which was later confirmed back in England.

Mrs Edgar said: "At the very beginning of it all I never imagined it to be something so huge. I had never heard of JIA.

"I do remember being in the rheumatologist's office in New York and looking at pamphlets about JIA and I just remember looking at my husband and thinking that's not us we're not going to have to do this.

"And now it feels very normal. After the initial shock you just take it on board."

When Justin was diagnosed the family found themselves facing the unknown. There has been no cause found for JIA, which is a group of illnesses with similar symptoms, and arthritis is often only associated with older people.

But JIA is as common as childhood diabetes and affects one child in every thousand.

The Arthritis Research Campaign (ARC) is hoping to raise £3 million in three years for research into arthritis affecting children through its Noddy appeal.

Families have been taking part in three-mile walks across the country and Justin along with his parents and three brothers Benjamin, who is seven months, and six-year-old twins Xavier and Thomas participated in the recent London event in Regent's Park.

Justin was thought to be in remission until last month when both his knees swelled up and he had to have them aspirated doctors at Great Ormond Street took out 48.5 millilitres of fluid from his right knee and ten from his left.

Under the care of GOSH and Chelsea and Westminster Hospital, the family has no complaints about Justin's day-to-day maintenance but were left shocked and frustrated at the lack of response to his acute flare.

Mrs Edgar said: "The waiting time on the NHS for joint aspirations is three to six months.

"Luckily our private insurance covered it but what about all the children who have to live in pain and be carried around by their parents because they can't walk?

"The rheumatologists are pulling their hair out."

Early on in Justin's illness when the swelling and pain started to spread from his knees to his ankles, elbows and fingers he had four of his joints aspirated.

In some cases this can take care of the swelling for up to a year but Justin's came back with a vengeance. With JIA it is the body's own immune system attacking the joints and so Justin was put on methotrexate, an immuno suppressive, to control the arthritis.

He originally took this drug in tablet form but it started to make him nauseous and he opted to have injections instead. Mrs Edgar was trained at Chelsea and Westminster Hospital to give the injections.

She said: "The first one was very nerve-racking.

"The injections really did the job because they bypass the digestive tract and just go straight into the blood stream.

"Justin was very brave and very cool about the whole deal."

Justin is now back on the methotrexate after six months of being injection-free. Mrs Edgar admits it is heart-breaking to see her "little chap" having such a hard time but remains positive.

She said: "Out of all the difficulties what shines through is the amazing resilience and ability that a child has to live in the moment.

"I think very often the child reveals a strength that helps pull the parent together and you think if they can get through it then for goodness sake so can I."

When Justin was diagnosed he was old enough to verbalise how he was feeling but JIA can affect babies as young as six months.

One of the scarier aspects of childhood arthritis for Mrs Edgar is uveitis, which is an inflammation of the eyes, because it is unseen and can lead to severely damaged vision and even blindness if it goes unchecked.

Justin feels a little bit of pain in his eye, meaning it is easier to be alert to any activity and he can receive treatment from his opthalmologist at GOSH.

Justin's parents have to be ever-vigilant in looking for symptoms. Mrs Edgar's background as a classical dancer has helped as she can often spot physical problems such as inflammation and impaired movement very quickly.

When Justin's arthritis was at its worst he followed a routine of a hot bath in the morning to wake up his joints and an exercise plan to keep his muscles strong and active.

The physiotherapist at GOSH designed the plan for him and Mrs Edgar was able to add movements which she, as a dancer, knew would work and strengthen other parts of his body.

She jokes she is a "drill sergeant" when it comes to Justin doing his exercise but is always thinking of ways of making it interesting and not scary for him to live with JIA.

When Justin was working on getting his strength back he had one-to-one sessions of gyrotonics, which is a system of working the body in a circular manner so that all the joint points are used.

Mrs Edgar said: "Gyrotonics is not so well-known but, as a former dancer, I had access into these creative techniques.

"It helps to do research and make things fun for the child.

"Massage, homeopathy, reiki, acupressure and osteopathy are all things we do with Justin in addition to following the instructions of the rheumatologist."

Statistically about three in five children will have few or no physical problems as adults.

There is the hope for Justin and his family that JIA will just go away and with new drugs, techniques and research on the horizon help is at hand for the 12,000 children affected by JIA.

Mrs Edgar said: "Years ago with Justin's severity of the disease he would have been crippled by it but now he's going to do just fine."