A couple is working to raise awareness of childhood arthritis, after they struggled to spot signs that their son had developed the condition.
Despite most people associating arthritis with the elderly, a form of the condition known as Juvenile Idiopathic Arthritis (JIA) actually affects 12,000 children in the UK.
It is one of the most common causes of physical disability during early childhood, according to JIA.org.
Chimen Chauhan, 40, and her husband Anil, 42, first noticed signs that there may be something wrong with their son Aran just before his third birthday. He was diagnosed with JIA, just a few weeks later.
“We were devastated,” the mother told HuffPost UK. “But more than that, we were scared for the future.
“Every parent will tell you that the health of their children is the most important thing, so were left really shaken and found it difficult to deal with if I’m honest.”
The Chauhan family are currently joining the National Rheumatoid Arthritis Society in supporting a national initiative encouraging people to #WearPurpleForJIA on Friday 9 June.
The aim is to help raise awareness of the childhood disease and further support children and families dealing with the condition.
JIA is an autoimmune disease that causes inflammation of the joints. In some cases, it can also cause serious problems with the eyes. It can affect very young children through to adolescents and is not a curable condition.
Chauhan said she noticed her son’s left knee was red and swollen when he was a toddler, but assumed he had fallen over and knocked it, which wouldn’t have been unusual.
But when the swelling didn’t settle and his right knee also became swollen, she thought there may be something underlying that was going on.
“There were other clues,” Chauahn said. “But being so young at the time, Aran wasn’t able to articulate how he was feeling.
“He was an early walker, but instead of charging around like most two-year-olds, at times, he was quite reluctant to walk and I would end up carrying him.
“It’s something I feel guilty about and wonder whether we could have picked up on his symptoms sooner.”
Aran’s sore knee joints affected everything from walking, to climbing up and down the stairs and even getting out of bed.
“Due to the inflammation, he lost his full range of movement and he would have periods where he was extremely tired and lethargic,” she said.
Symptoms of Juvenile Idiopathic Arthritis:
- Stiff joints, especially after resting.
- Eye inflammation.
- Joints that are warm to touch.
- Favouring one limb over another or limping.
- Inability to bend or straighten joints completely.
- Swollen lymph nodes.
- Reduced appetite/weight loss.
Source: Arthritis UK.
After Aran’s initial appointment with a paediatrician, he was referred to see a paediatric rheumatologist who specialised in musculoskeletal diseases.
It was during this visit that the possibility of JIA was discussed. Aran had several blood tests and from then it only took two weeks for the diagnosis to be confirmed.
Chauhan’s husband is a GP, so he had heard of the condition before, but she had no idea it existed.
Treatment of JIA can include drugs, physiotherapy and occupational therapy. Drugs cannot cure arthritis, but they can control the symptoms and help to reduce the possibility of joint damage.
Aran, now 11, has tried several treatment options and he is currently in remission, having been off his medication for six months,
He continues to participate fully with his day-to-day life and is able to play an active role in sport - everything from football to cricket and rugby.
Speaking about how his JIA affects him daily, Aran told HuffPost UK: “I have learnt to live with my symptoms as it’s all I’ve ever really known.
“It has never stopped me from taking part in the things that I enjoy although sometimes when I play sports it can be painful for me.
“The weekly injections were not very pleasant so I am glad that these have stopped. My knees are feeling ok at the moment so I hope they stay like this.
“Other than having to do my daily physio stretches, my day-to-day is the same as any other 11-year-old.”
Looking to the future, Chauhan said she doesn’t know how it may affect her son.
“Things are really good at the moment,” she said. “My hope is that the disease has burned itself out, but of course, this is something only time will tell.
“Even though Aran faces these challenges, we are determined that nothing will hold him back from achieving anything he wants to in life.”
Speaking about JIA ahead of #WearPurpleForJIA, Anne Gilbert, youth and family services manager commented: “I meet so many children and families affected by this awful childhood disease.
“There is always more to be done to support them.”
To find out more, visit: www.jia.org.uk/wearpurpleforjia.
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