REAL LIFE: “My daughter has Juvenile Arthritis and an amazing pain threshold”
Nylah was diagnosed with the painful condition when she was three-years-old.
Juvenile idiopathic arthritis (JIA) is an autoimmune disorder where the body’s own immune system attacks the joints. It is painful as any joint in the body may become inflamed but the most commonly affected are the knees, hips, hands and feet.
Other symptoms can include fatigue, fevers, loss of appetitie, skin rashes and inflammation of the eyes.
Generally, the condition is diagnosed before the age of 16.
For Fox Sports presenter and father of four, Adam Peacock, his youngest daughter, Nylah was diagnosed with JIA when she was three-years-old.
“In October 2019 we noticed Nylah wasn’t herself,” Adam tells Bounty Parents.
“She looked tired, had some mild temperatures, she was irritable and not eating. As a parent you wait for those mild temps to become higher and for something like an ear infection to explain it,” he says.
For Adam and his wife, Rachel their next step was to see a doctor.
“As a three-year-old, Nylah couldn’t really communicate what the problem was but as her temps never got higher and lasted for around a fortnight, we took her for a blood test. Then, one Thursday afternoon we get a call to see the doctor, and she referred us straight to hospital. At this stage, everything was a complete mystery, and a damn big worry.”
As there is no single test to diagnose juvenile arthritis, Adam says it was down to luck that they received a diagnosis for Nylah so quickly.
“We count ourselves really lucky here. We checked into hospital on the Thursday and the paediatricians were fantastic. They were really thorough and worked through all the possibilities, eventually narrowing it down to juvenile arthritis. Rachel and I looked at each other and were totally surprised. We both thought, ‘Juvenile what? Isn’t arthritis for old people?’
“Two key markers in her follow up blood tests showed huge inflammation irregularities, and mixed with her other symptoms she was experiencing – by now we could feel her joints were really warm, it all made sense.”
Nylah was three-year-old when she was diagnosed with juvenile arthritis.
The cause of juvenile arthritis is not yet fully understood. “This is the great mystery,” says Adam.
“Because education in the medical profession and the general community is so low when it comes to this, there is no real way of telling how many kids have it. I shudder to think how many have been misdiagnosed.
“Even in Nylah’s case, it’s amazing how tough she had been. We look back on photos from a year before her diagnosis and now notice swelling around the ankles and hands for instance. There is apparently around 6000 cases of it in Australia, but who really knows?
“As for a cure, there is no defined one – just treatment of the symptoms which can lead to remission,” says Adam.
According to Arthritis New South Wales, the overall treatments used for JIA aim to prevent or slow damage to joints and/ or progression of the illness; reduce symptoms including inflammation, stiffness and pain; and to assist your child’s normal growth and development, and ensure that they are able to get back to their usual activities and lead the most normal life possible.
“Nylah started off on a heavy dose of steroids to quell the pain, as well as methotrexate to help balance the immune system. After a three-month period on that, she then went on to a biolagic called Humira. She couldn’t go straight on to that, because it’s part of the PBS (and is damn expensive, $1300 per shot without the PBS) and can’t be prescribed straight away – even if the specialist we have wanted to,” explains Adam.
“So she’s on that and a lower dose of methotrexate now – the Humira is via needle every fortnight (can’t say that’s much fun) and every Friday is methotrexate night, which knocks her around on Saturday, as it makes you feel ill.
“On top of that, she’s had to see eye specialists – a side effect of JIA is blindness – and also physios and play therapy. The latter was really important and there’s so much going on her head as to dealing with what she has, especially seeing how her three siblings are healthy kids.”
After her diagnosis Nylah, the youngest of four children, was put on a heavy dose of steroids for pain management.
Nylah’s journey with juvenile arthritis is thankfully improving but it’s ongoing.
“Compared to 12 months ago she’s come so far,” says Adam.
“There are ups and downs along the way, but the biggest thing for us has been readying her for school. It’s really knocked her around mentally. She became ultra-clingy to mum, became really withdrawn, even stopped imaginative play which is such a key component of early childhood. She’s just started school, and there’ll be some more ups and downs but the school (Mona Vale) have been great with welcoming her.
“The pain is still there. Some days she’ll be zonked, and really sore. Heat packs help. The amazing thing is her pain threshold. It’s totally different to a normal person, almost like her mind has become conditioned to a different level of pain to normal people.”
Adam says everyday life for Nylah has been tough.
“It has been a struggle. When she was really bad – a flare they call it – she just stopped playing, was really struggling to walk let alone play normally. Socially she was really withdrawn. Now she’s a bit better and building up a friendship group will be crucial in the next 12 months as she starts school. I think being in that much pain must have given her so much self-doubt and a fair bit of anger.”
Adam says JIA has been tough on Nylah mentally and that preparing her for school this year has been a big focus.
As for the future, Adam is doing his bit to help raise awareness and money for research, with the ultimate aim of one day curing juvenile arthritis.
“A few mates and I do an annual fitness challenge. In the past four years we have raised over $100k for various causes. This year we are raising money for the Juvenile Arthritis Foundation (JAFA) set up in late 2019.
“On March 19, we’re paddling, running and cycling around Narrabeen Lake on Sydney’s Northern Beaches. It’s a buy-in to do it, plus we’re collecting donations, selling sponsorship, having a raffle on the day and all money raised goes direct to JAFA to help kick-start the foundation with the aim of raising money to help with awareness and research.”
To find out how you can donate to this fundraiser event, click here.
