Diagnosing juvenile arthritis can take 10 months or more
Due to low awareness among health professionals, it takes an average of 10 months from the start of symptoms (like painful joints or difficulty walking, crawling, kneeling, writing, chewing, lifting or holding things) for a child with juvenile arthritis to get diagnosed. That’s a long time to be in pain and a long time for parents to be anxious and stressed about what’s wrong and how they can get help. For some children, diagnosis can take up to two years or more with parents often told ‘it’s just growing pains’ or ‘kids don’t get arthritis’.
Between the start of symptoms and being diagnosed, children are often referred to multiple specialists and go through painful and
expensive diagnostic tests, including some which require a general anaesthetic. Sadly, it is not uncommon for some children to already have permanent joint damage or loss of vision by the time
they are diagnosed. JAFA is working hard to raise awareness and stop this happening.
Some children with arthritis need regular joint injections
Ongoing, untreated inflammation of the joints is not only painful, it causes permanent damage and disability.
Consequently, many children with juvenile arthritis need joint injections of corticosteroids to reduce the inflammation and associated pain in their joints. This is mostly done under general anaesthetic in hospital as a ‘day patient’. It is in addition to the child’s immunosuppressant
and/or other medications and treatments.
Some children need to have repeated joint injections. Not only can this be stressful, it also requires time off school for the child and time
off work for busy parents.
Some arthritis medications can cause sun sensitivity
Children with juvenile arthritis may need extra sun protection when playing outside. This includes more frequent applications of sunscreen, a hat at all times and sunglasses.
Certain medications used to treat juvenile arthritis can cause sun sensitivity including severe sunburn, and sometimes rashes, with even mild exposure.
Ask your child’s rheumatologist or rheumatology nurse about this.
Some children with arthritis need injections and infusions
Many children with arthritis have to take their medications by injection. The injections can be quite painful – not just the needle going in but the drugs themselves can hurt a lot. Not surprisingly many kids develop needle phobias. This is very hard on them and their families, especially the parent or carer who has to give the injections.
Others have to go to hospital every couple of weeks to take their medications by intravenous infusion. This is very time consuming for them and their parents. It means yet another day off school for the child and yet another day off work for a parent. The medications can also make the child feel sick for the next day or so.
Some kids have to do BOTH injections and infusions.
The importance of eye checks - especially for younger children
All children with rheumatic conditions need their eyes checked regularly to screen for early signs of uveitis. Uveitis is an inflammatory eye condition that can cause permanent loss of vision. It affects about 1 in 4 children with juvenile arthritis.
The ophthalmologists who specialise in uveitis emphasise that it is vital to get regular eye checks. This applies especially to younger children because they don’t notice changes to their own vision and therefore
can’t tell you about it. They just think the world looks the same to everyone else as it does to them.
If you don’t know what uveitis is or how often your child’s eyes should be checked – ask your child’s rheumatologist or rheumatology nurse.
But please do it now – vision is precious.
A diagnosis of juvenile arthritis affects siblings too
There is evidence that siblings of children with disabilities or chronic diseases like juvenile arthritis can have problems adjusting and coping too. This is understandable given that so much attention has to be centred on the child with the health problem not to mention the overall impact on family life.
There is a suggestion that siblings who are asked to take some responsibility for looking after/helping the child with the health problem do better than those who are not asked to help.
Either way, it’s important to talk with siblings about their feelings. And, there’s a national non-profit organisation that provides information, education and support for siblings – http://siblingsaustralia.org.au/
Our paediatric rheumatology workforce lags far behind international standards
Australian pediatric rheumatologists are highly skilled, dedicated and compassionate. They are among the best in the world. But it’s official …… we don’t have anywhere near enough of them!
A study comparing our paediatric rheumatology workforce to other similarly developed countries found that Australia falls more than 220% below the ideal and 66% below routine standards.
This is because our State and Territory Governments are not providing enough funding for these positions. Why not write to your local State or Territory Member of Parliament and ask them to do something about it?
There's an international day for children with arthritis
It’s called WORD Day and it falls on 18 March each year. WORD stands for WOrld (young) Rheumatic Diseases.
WORD Day was initiated in 2019 by the European Network of Children’s Arthritis. Its purpose is to draw attention to the plight of children and young people with juvenile arthritis/childhood rheumatic diseases.
JAFA celebrated WORD Day 2021 by holding a political awareness-raising event in Parliament House where it launched a national campaign to ‘Stop Pain and Disability in Kids with Arthritis’.