‘Never give up’: Schoolgirl’s message to other children with arthritis

A schoolgirl living with arthritis since she was a toddler is encouraging others with the condition to “never give up“.

Eight-year-old Mia, from Edinburgh, was diagnosed with juvenile idiopathic arthritis (JIA) at just 18 months old after her mum noticed she had developed a limp.

Arthritis is often associated with older people, but the condition can develop in children as young as six months old, affecting around one in 1,000 children.

JIA occurs when the immune system mistakenly attacks healthy joint tissue, causing chronic inflammation, and experts say early diagnosis is vital to reduce the risk of lasting damage to children’s joints and eyes.

‘I thought it only affected older people’

For mum Gillian Costley, it was difficult to come to terms with.

The family were given the news at the Royal Hospital for Children and Young People in Edinburgh.

“I thought they were wrong. I thought arthritis was something that old people get,” she told STV News.

“I thought it would be fine, she’ll take stronger painkillers, a bit of physiotherapy and she’ll be okay.

“Then came the reality that this was not straightforward.”

Over the next six years, finding the right treatment for Mia remained a challenge.

She went on to develop polyarticular arthritis, a form of the condition affecting five or more joints.

She also developed uveitis – inflammation in both eyes commonly linked to the condition – three years ago, which required steroid eye drops. She now gets eye checks every two to three months and uses eye drops for her dry eyes.

Early treatments with methotrexate made Mia severely ill, resulting in liver issues and throat pain, while shortages during the pandemic added strain to the family’s journey.

Today, she takes daily medication and has injections every two weeks.

Gillian said: “The injections were actually quite horrific, because she was only 18 months and having to try and get a cannula in. She wasn’t allowed any food before it. It was horrible to watch.

“I didn’t like this idea of pumping medicine into Mia, especially when she was being sick.

“But when it did start working, and she started understanding it better… It’s been a tough journey but I would say it has been worth it.”

Often described as an invisible condition, childhood arthritis can make everyday limitations difficult for others to understand.

Because Mia’s pain wasn’t obvious to teachers or classmates, learning to speak out was a critical milestone.

Gillian added: “I think the worst thing for me was when Mia would come home and be upset. When she was sore, she would keep it inside, come home and explode at home and be a bit frustrated.

“I’ve told her ‘you need to use your voice because we can’t see it.'”

Mia added: “School is a bit tricky sometimes, as people don’t know when I’m sore. Some people don’t get that I sometimes can’t move.

“I’ve told them that I struggle to run so when I say stop, they just walk or pace with me around the school. I usually like going on my skates and my bike, because then I get to catch up with them if they’re running or something.”

Researchers say greater awareness among medical professionals is needed to help identify the condition earlier.

Eve Smith is a senior lecturer in pediatric rheumatology at the University of Glasgow.

She said: “When most people think of arthritis, they think of an adult, middle-aged or a gran or something, but actually it’s something that can affect you.

“Presenting to the GP multiple times can take time, and in that time damage to their joints, inflammation, often painless. Knowing someone’s got arthritis, picking up on it early is really important.”

Eve said the outlook can vary for children with the condition. While some may go into remission and come off treatment, others can experience further flares and require treatment into adulthood.

But she said advances in research and treatment had led to significant improvements in care.

“If you went back 30, 40 years, our specialty would see patients in wheelchairs and having prolonged admissions for rehabilitation. We don’t see that anymore.

“Our hope is that all children with arthritis will be doing everything that they want to do, getting to gymnastics, playing football. That relies on us getting them diagnosed in a timely way before any complication happens.”

For Mia, the right diagnosis and treatment have helped her continue doing the things she loves – from dancing and swimming to gymnastics and running.

“I’m really happy that the medicine helps me do more fun activities and stuff like that,” she said.

‘I’m so proud of her’

Gillian admitted she had previously been overprotective of Mia.

“If I could wrap her in cotton wool, I would have. I used to want to keep her in in the winter, but she needs to keep moving.

“I still feel nervous and then I see she’s more capable than you think she is. There’s no reason for me to be stopping her.”

Since learning to step back, Gillian has watched her daughter go from strength to strength.

She recalled the moment she watched Mia dance on stage in a show at the Edinburgh International Conference Centre.

“I’m so proud of her, it makes me emotional. I was sitting there in happy tears.”

Reflecting on their six-year journey, Gillian urged other families going through a similar experience to be patient with treatment and remain positive.

She said: “I would say to any parent starting now: do not expect results straight away and don’t panic. You’re told it will work, but it can take time.”

Mia added: “I want others to know: ‘Never give up.'”