Study to deepen understanding of rare disabling arthritis affecting children
After being diagnosed at three-years-old, Amy reflects on long journey to getting right treatments – enabling her to study violin and karate
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I was diagnosed of juvenile idiopathic
arthritis when I was three years old.
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it was luckily, then, controlled
with just a joint injection
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and I was in remission
from then until around the age of ten.
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Juvenile idiopathic arthritis is a type
of childhood onset inflammatory arthritis.
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What that means is that children
experience inflammation
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where the immune system is active
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and it results in inflammation
occurring within the joints
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it's usually worse in the mornings
with things such as stiffness
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in my joints or struggling to, like,
get up out of chairs and out of bed.
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And then especially with pain in my hands,
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such as holding heavy objects
and things like that.
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One of the biggest challenges, actually,
in the treatment of children
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and young people with arthritis is,
achieving early and effective treatment
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for that we need to understand
which drugs will work for which child.
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One of the ways that we're doing
that is through the MAPJAG study,
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in which we perform synovial tissue
biopsies from the lining of the joint
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and performed in the ultrasound guidance
so that we can remove
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small amounts of tissue
from the lining of the joint
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at the same time the child is
undergoing a joint injection procedure.
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We then take those tissue samples
away to the lab for analysis to understand
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what's happening actually,
within the cells that are present
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within the lining of that joint,
and what that tells us about
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whether a child will respond
to a particular type of treatment or not.
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the first medication I was
on was methotrexate.
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However, it managed my condition well,
but the side effects meant
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it wasn't really worth it for me.
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I'm now on a current medication,
which is a lot
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better, doesn't make me sick,
and things like that.
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what's made this now possible
is the ability to perform those type
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of biopsies, using an ultrasound to guide
exactly where the needle is going.
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I think it's really important
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that the right research goes
into making sure that medications
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are found to people at the right time
in their treatment journeys.
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I'm currently working towards my grade
eight violent exam.
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with my wrists being painful.
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I also struggled with in class
on the right medication,
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and that requires a lot of,
strength and mobility with my hand.
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it wouldn't have been possible
without finding the right medication
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and managing to get
my condition under control.
Credit: 2025, University of Birmingham
Young people with a rare condition called Juvenile Idiopathic Arthritis (JIA) are taking part in clinical research to better understand the condition, including to find out why some children have more severe arthritis and others get better on first treatment.
The MAP-JAG study coordinated by the University of Birmingham is working with children and young people who have been diagnosed with the rare childhood condition, JIA, that results in joint swelling and loss of mobility. While there are now treatments that alleviate the symptoms, many of which cause debilitating side-effects and not enough is understood about the condition which affects 1 in 1000 children.
Children and young people diagnosed with JIA around the country are being invited to take part in the study, which involves taking additional tissues from affected joints.
Adam Croft, Versus Arthritis Professor of Rheumatology at the University of Birmingham, and Honorary Consultant Rheumatologist at University Hospital of Birmingham NHS Trust, and Chief Investigator of the MAP-JAG study said:
“We still know very little about Juvenile Idiopathic Arthritis. While there are treatments that can reduce swelling and mean that young people affected by the condition are able to regain mobility, we don’t know how the condition starts and whether some people or some conditions make it more likely that young people will get JIA.
“MAP-JAG seeks to learn much more about the condition by studying tissue and fluid taken from affected joints. We hope that through detailed study which has already provided a wealth of information for adult arthritis, we can identify new treatment options and potentially predict young people at risk of JIA and other auto-immune inflammatory diseases so that children like Amy can get help as soon as they experience symptoms.”
Arthritis diagnosis at three – but now working towards a black belt in Karate
Arthritis isn’t the usual diagnosis a parent expects to hear for a three-year-old girl, yet that’s exactly the news Amy and her family received when they were told she had JIA.
Amy, now 17 years old, recounts:
“After my initial diagnosis at three, I then had a major flare up at ten and I’ve subsequently been working with doctors to manage the arthritis. The first medications I tried gave side effects that meant it wasn’t worth it, and I’ve had various flairs and things have been up and down over the years, with lots of things like physio, joint injections and different drugs to control it.
“It's usually worse in the mornings and it can affect me in different ways such as stiffness in my joints or struggling to get up out of chairs and out of bed. And then especially with pain in my hands, such as holding heavy objects and things like that which affects my ability to the things I love.”
Amy’s arthritis is currently under control which allows her to follow her musical interest playing the violin, and keeping active with sports like Karate where she is working towards black belt. Amy reflects on the journey to finding the right medication to help her and the importance of research such as MAP-JAG to help clinicians better understand this condition.
Amy said: “With JIA being a condition that affects so many people across the world, it's important that the right research is carried out to make sure the right medications go to the right people. As for myself, trialling different medications to find the right one often meant that I was left with side effects or my condition wasn't properly managed, whereas it could have been better managed and allow me to do more things.”
Initial funding from the Kennedy Trust for Rheumatology Research, has helped to set up a network between the University of Birmingham, University of Oxford and UCL to begin taking and analysing tissue samples.
Samples have been obtained from children and young people at Birmingham Children’s Hospital and Great Ormand Street Hospital, and further funding from Versus Arthritis, the NIHR Birmingham Biomedical Research Centre, and the Medical Research Council has meant that the study has extended across the UK to work with more young people. Three new sites are now in set-up phase and the Network will become known as TRICIA (tissue research in childhood inflammatory arthritis). The research has also been extensively supported from the outset by patient partners, including families whose children have JIA.