Why thousands of young people with chronic arthritis are going undiagnosed – and the tell-tale signs to look out for in YOUR child

When six-year-old Florence Marston-Bolton started experiencing knee pain, her parents had no reason to believe there was anything seriously wrong.

He remembers a bout of the flu that left him unable to play sports at school or play with his friends during recess.

Doctors initially told his family that the pain would go away in a few weeks. But five years later and countless visits to her GP, Florence was still in pain.

‘I remember being in a lot of pain,’ says the art student, now 19. ‘I would beg my mother to take me to the hospital, but the doctors got no answer.

‘It was difficult to explain how I struggled as a child and the impact it had on me.

‘I used to be labeled a hypochondriac and a slacker for not being able to participate in things and this started to have a real impact on me mentally; It was really isolating.’

Eventually, Florence’s mother requested to see a specialist, and the real cause was revealed: juvenile idiopathic arthritis (JIA), a painful autoimmune disease that attacks the joints.

Florence says the diagnosis was a relief.

He is currently managing his condition through medication and physiotherapy, but doctors have told him delays in diagnosis have long-term effects.

‘Due to repeated flare-ups without medication my knees are now bent inwards and I can’t change that,’ he says. ‘It causes walking problems from time to time and I suffer from hypermobility’ [joints have a greater range of motion than usual]Doctors also said that this may be due to not being diagnosed for a long time.’

Experts say he is not alone, and many children with JIA go undiagnosed, which can have lifelong consequences.

Dr Peters, consultant pediatric rheumatologist at Alder Hey Children’s Hospital in Liverpool. ‘Juvenile idiopathic arthritis can be really difficult to diagnose,’ says Gavin Cleary. ‘This is because it is often confused with infection or injury, and the problem is that if left undiagnosed it can cause irreparable damage to the joints.’

A report this year from the National Confidential Inquiry into Patient Outcome and Death, which reviewed clinical practices, examined the treatment of JIA. It concluded: ‘A lack of awareness among JIA healthcare professionals is causing children to be bounced around the NHS and diagnosis is mostly based on luck.’

The report found that only one in five GP practices had a protocol for the investigation or treatment of young people with the condition.

It is estimated that there are 12,000 people with JIA in the UK under the age of 16; This is equivalent to one in 1,000 children.

JIA is a chronic disease, and despite its name, young people fail to grow as was once believed. The majority will continue to use this feature into adulthood.

The cause is unknown, but infections can trigger the immune system to become overactive in some people, leading to inflammation. It results in pain, stiffness and swelling in the joints and can be debilitating.

Experts say there is clear advice for parents who are concerned their child may have JIA.

‘If your child seems stiff, especially in the morning – but also complains that it is affecting their day at school – as well as a limp that is not explained by injury and a change in their ability to carry out daily tasks, particularly their ability to grasp things with their hands, then you should see a doctor,’ says Dr Cleary.

‘If these symptoms persist, you should be on the lookout for JIA and seek a referral to a pediatric rheumatologist.’

Campaigners warn the condition is still misdiagnosed and are calling for more support for children to prevent lasting problems.

Lynne Woolley, head of youth and family service at the charity Arthritis UK, said: ‘As a service supporting children and young people living with arthritis, we hear all too often that there is a significant delay in diagnosis. Youth with JIA and their families often do not feel like they are taken seriously.

‘They move from doctor to doctor; They live in uncertainty, anxiety and pain. If left untreated, arthritis can significantly affect a child or young person’s physical health, including irreversible damage to joints and eyes. Mental health can also suffer.

‘And this all comes at an important time in their lives when their bodies are growing and they need to be able to focus on learning, playing, growing in confidence and preparing for adult life.

‘That’s why Arthritis UK is investing in life-changing research to better understand the causes of arthritis and improve treatment. We also work directly with healthcare

By providing training to improve professionals’ diagnostic knowledge and confidence.

‘We provide reliable information and guidance for those affected

and we provide support to all newly diagnosed young people and families through our Young People and Families Service.’