Juvenile arthritis can occur in children as young as 1 year old. It can affect one joint or several joints. It can manifest itself in different ways but is invariably painful and distressing for both the child and their family.
Nylah is 4 now. She was diagnosed with polyarticular arthritis when she was just 3 years old. She has many joints affected – feet, knees, hips, back, neck, elbows, wrists, hands and jaw. Her parents say she is the toughest person they know. Her book about juvenile arthritis helps Nylah understand a little bit about what’s happening to her body but unfortunately it doesn’t stop the pain and sometimes she tells her parents “I cry because I have broken knees“.
Her mum took this video of Nylah to help raise awareness of the plight of children with arthritis.
Xavier is 6 years old. His mum told JAFA:
“Just before Xavier turned 2 he caught a virus. Nothing new, only this time he didn’t get better. Within six weeks he went from a little boy running around to a child who couldn’t even sit. After numerous doctor visits, tests, scans and hospital rooms we were given a diagnosis – juvenile idiopathic arthritis. No one could tell us why or how or what the future would hold. Looking back, that was probably a good thing.
“The past four years have been filled with infusions, injections, infections and hospital admissions. The impact of his disease is felt every day – pain, physical limitation, fatigue, illness, the psychological impact of constant medical intervention, and missing out on many of the activities his friends enjoy. His case is complex, yet there’s not much support for juvenile arthritis so, as his mum, I often feel I am in this alone. It is exhausting, heartbreaking and frightening. I try not to think about what the future holds. Instead I try to make each day the best, most regular six year old day it can be.”
Xavier’s favourite games and toys are Transformers, Roblox, Lego and hide and seek. He loves the Goosebumps and Anh Do Weirdo books. He hopes to soon to be able to play soccer in a team with other kids.
Laura is 10 years old. Her mum told JAFA Laura’s knee started hurting and swelling when she was 8.
“We were told it was ‘growing pains’ but, soon, she started crying when someone hugged her because her shoulders hurt. Then, her jaw became painful and sitting on the floor at school became difficult. Then, one morning, she went to pick up Lego off the floor but couldn’t bend down. Nearly 12 months after her knee began hurting, Laura was finally diagnosed with polyarticular juvenile idiopathic arthritis.
“Laura is better now than she was but her arthritis has not responded well to medication and has spread to almost every joint in her body. Her treatment with the third and last biologic drug regularly prescribed for juvenile arthritis in Australia is not working well so we will need to begin an unknown journey of ‘what next’ including trialling some other drugs. This won’t be easy. We live in a small town with no paediatric rheumatology services nearby so we drive a 1200km return trip to Sydney at least every three months for Laura’s check-ups. Luckily, we have family there to stay with but there is a financial and emotional burden attached to these trips.”
Alyanna is nearly 9. She was diagnosed with juvenile idiopathic arthritis when she was just 1 year old. About five years ago she also developed uveitis, an inflammatory eye disease associated with juvenile arthritis. Her mum told JAFA:
“There’s a lot to do:
- steroid drops in both eyes before school each morning
four times a day of lubricating drops to hydrate her eyes,
more drops after dinner to reduce the pressure inside her eyes
heated towel packed for 2 minutes each eye every day.
…… and all that is just for her uveitis.
“In addition, I inject her with methotrexate, her weekly immune-suppressing medication, every Friday before school, and we are currently sitting in the hospital room while she gets her monthly intravenous infusion of a different immune suppressant, infliximab.
“It’s very hard to see Alyanna go through all that she has to endure. She is stronger than I am that’s for sure. And, despite all this, she’s a happy child who understands why she has to be especially careful in certain situations. We all look after Alyanna – what she can and can’t do – it’s just our family’s way of life now.”
Daman is 13 and already he’s had juvenile arthritis for nearly 10 years. During that time he’s had multiple joint injections under general anaesthetic, years of painful subcutaneous injections, oral medications, and intravenous infusions of immune-suppressing drugs in hospital every few weeks.
The treatments help but he is never really free of pain. Despite this, when JAFA asked Daman if he would be willing to tell his story, this is what he said:
“Hi, I am Daman, I have juvenile idiopathic arthritis, most likely psoriatic arthritis. I was diagnosed at age 4 and I have arthritis in almost all of my joints. To have arthritis is painful, but it doesn’t mean you can’t do anything. If you get some medication from the awesome doctors, you can practically be like everyone else.”
Daman loves to be in the water, swimming, snorkelling and bodyboarding. He also loves fishing. When he’s too sore to be active he spends endless hours reading or watching documentaries.