Promoting awareness of rheumatic diseases in children
Friday 28 February 2020
International Word Day on 18 March is designed to raise awareness that children and young people also get rheumatic diseases.
It’s a message Priscilla Dendle and partner Paul Allen of Blackall are keen to promote, with daughter Abagail, who will be eight in May, diagnosed with Juvenile Idiopathic Arthritis in 2014.
The diagnosis came as a shock, Ms Dendle, who works at Blackall Hospital, recalls.
“We knew something was wrong but didn’t know what,’’ she said.
“Abagail was two years old then. Who would imagine a two-year-old would have arthritis?
“It’s something you normally associate with more elderly people, not babies.
“We noticed initially that Abagail had trouble with mobility – I had to carry her out of bed each morning.
“She also had joint swelling and ongoing pain and was generally unwilling to play or join in active games with her many friends.’’
Ms Dendle said when she and partner Paul first noticed Abagail’s symptoms, they worked closely with Central West Health GPs to try to identify the issue.
“The referral pathway then led us to Dr Anita Cohn from the Queensland Children’s Hospital – who is the visiting paediatric specialist here in the Central West,’’ Ms Dendle said.
“From there, we were quickly referred to the specialist paediatric rheumatologist service at the Queensland Children’s Hospital in Brisbane.
“Before we knew it, and despite living in such a remote community, we were able to access the specialist services and treatment that Abagail needs.
“It’s been a challenging journey, with so much for us to learn, but we felt so well supported throughout by Central West Health’s clinical systems and pathways.
“If her disease and symptoms change and we need assistance quickly, we call the specialist team at the Queensland Children’s Hospital and they go above and beyond to effect immediate care. It’s such a relief for us as a family.’’
Ms Dendle said Abagail currently was in remission and not requiring treatment, although she continued to be monitored closely.
“She has not had a flare-up of her condition since last year,’’ she said.
“I think we are very lucky because I’ve heard so many stories about other children with the same condition and how it has affected them.’’
Juvenile Idiopathic Arthritis, or JIA, is a general name for several kinds of arthritis affecting young people, with the term “idiopathic’’ meaning that the causes of arthritis in children are not yet fully understood.
Queensland Children’s Hospital Director of Rheumatology Dr Ben Whitehead, who has worked with Abagail and her family, said the outlook for children who were treated for JIA was usually very positive.
“However, having a child with JIA has a huge impact on the whole family,’’ he said.
“Diagnosis can be a life-changing and very stressful time, particularly for parents and carers.
“The good news is that treatments for JIA are improving constantly.
“While there is no cure for JIA, many children with the condition who receive early diagnosis and treatment will grow up without any lasting effects of their arthritis.
“The causes of arthritis in children are not yet fully understood. But we do know that JIA is an autoimmune condition.
“This means the body’s immune system (its protective mechanism against infection) starts to mistakenly attack healthy cells of the body.
“This happens for reasons we don’t yet understand, possibly after being triggered by a virus or bacterial infection.
“Symptoms can fluctuate – meaning they may vary from day to day and week to week. There will be times when symptoms are worse and times when they are in remission.
“The main ways of treating JIA include medication for inflammation, exercise, joint injections to reduce inflammation in particular joints and pain management.’’
Ms Dendle has two other children besides Abagail and says she will be doing whatever she can to promote International Word Day and the message that rheumatic and arthritic conditions can affect anyone, no matter how young.
“We are participating in a button challenge, where people can be videotaped donning gloves and then racing to do up their shirt buttons,’’ she said.
“This gives people an idea of how it feels to do up buttons when you have an arthritic condition.
“These videos will then be posted to social media to help promote awareness.’’
- For more information about JIA, visit: https://arthritisaustralia.com.au/types-ofarthritis/jia/
For further information contact:
Principal Media Officer, Rural and Remote Qld
Media and Communication
Department of Health
(07) 3708 5379