Story reprinted with permission from Jo Turner.
In June 2003, my 13-month-old baby boy Bayly stopped trying to walk, stopped cruising, stopped crawling, and started crying and clinging.
And so began our journey with juvenile idiopathic arthritis, or JIA – a long, hard, often lonely road, with no end in sight just yet.
We’d known since he was six months old that something was not quite right; at that time, he’d been diagnosed with iron-deficient anaemia and cow’s milk protein intolerance.
Then, at 13 months, Bayly’s left ankle swelled up right before my eyes. But it wasn’t until he was 19 months old that he was diagnosed with JIA, which the doctors in hindsight say was probably causing his symptoms when he was six months.
Bayly didn’t start walking until he was 21 months old. Now, nearly five years later, we are still treading carefully with this disease.
What is JIA?
JIA is a cruel, chronic, sometimes crippling childhood illness. The term refers to all types of arthritis that affect children (see box below).
Too many kids with JIA are written off as being whingy, lazy, or slow to grow. JIA is often misdiagnosed as ‘growing pains’.
At first, Bayly was diagnosed with pauciarticular arthritis, a type of JIA that affects four or fewer joints. His diagnosis has since been upgraded to extended oligo JIA, since the disease has spread to more joints.
JIA is felt by every member of the family. The child often cannot describe what they are feeling, since the average age at onset is just two years old.
Parents may go through a guilt and grieving process as they blame themselves for either causing it, or being unable to cure it.
And siblings have their own emotional rollercoaster ride as they see their brother or sister getting extra attention for their pain.
But since JIA is not hereditary, it has the added effect of making one feel incredibly alone.
Juvenile idiopathic arthritis: quick facts
Juvenile idiopathic arthritis is a general term for arthritis in under-16s. ‘Idiopathic’ means ‘of unknown cause’.
Around one in a thousand children is diagnosed with some kind of juvenile arthritis, but the true numbers may be as high as one in 250, since many cases go undiagnosed.
The most common type is pauciarticular JIA, or oligoarthritis, involving four or fewer joints. In extended oligoarthritis, more than four joints are affected after a time.
Depending on the type of juvenile arthritis, not just the joints but many areas of the body may be affected, including the eyes, skin and internal organs.
Joint pain, swelling, and stiffness are common symptoms. Fever, rashes, anaemia and vision problems can also occur.
Symptoms vary greatly between different children, and even in one child, can change from day to day.
Physiotherapy helps strengthen muscles, keep the joints flexible and encourage normal limb development.
Medications can reduce inflammation, relieve pain and improve movement.
Sources: Better Health Channel, Arthritis NSW, Arthritis Australia.
Now, I am not one to sit back and suffer in silence – I want to know the answers, and will keep asking until someone can give them to me. I want to share my knowledge and support with others too.
If I did not turn the despair that I have sometimes felt into positive energy, I would just be a little saline puddle on the floor.
I’m still trying to find the answers to many questions, but I’ve spent a lot of time on the phone sharing what I do know with other parents of newly-diagnosed children (what can I say, I like to chat!).
And I’ve set up an Australian online support group for JIA, which now also has members from New Zealand and the USA. Anyone, at any time of any day, can post a query, or have a cry, and someone is ‘listening’.
There is little real awareness of JIA in our community, either among the general or medical population. So I designed a logo with the message that “Kids get arthritis too!”.
We wear it every day, as a kind of walking billboard. It starts a lot of conversations!
When I learned that JIA is more common than type 1 diabetes, cystic fibrosis, or cerebral palsy – yet was not automatically eligible for the Centrelink Carer Allowance like these other illnesses – I fought for it to be so.
When I realised there was no organisation specifically to help JIA children and their families, I bothered the Arthritis Foundation of New South Wales until there was one.
When I saw how far many families have to travel to get treatment, I started working with my state and federal politicians and our local children’s hospital, to get regional JIA clinics operating.
And when I heard about some awesome parents in the United States who’d set up the American Juvenile Arthritis Organisation – which has an annual conference that brings together families from all over the USA – well, I knew we had to start fundraising and get a passport!
Our trip to Pennsylvania in June-July 2007 convinced me of two things:
Australia is not so far behind in its medical management of JIA – in fact, in some ways we are ahead. (Bayly’s health team is fantastic!)
We still have a way to go to get a national organisation and conference such as the AJAO happening here.
(I also learnt that five-year-olds are intrigued with public rest rooms, but that’s a whole other story!)
Ups and downs
In amongst this advocacy, I work two other jobs, and I have the everyday demands of being a wife and mother.
I dread having to give Bayly a needle in his little tummy every week, and struggle with the fear of side effects of the various medications he must take.
I hate having to hold him down for blood tests and other medical procedures. I get tired of rounding up the kids for yet another trip to hospital. And I despair at the stares in the street, and the bullying that Bayly suffers at school.
But while I absolutely despise this disease, I will not let it stop us from loving life.
I try to enjoy every day. I relish every time I hear my kids laugh, or see my son try to run.
And at the end of the day, I feel a kind of humble pride that I can make a difference.