Juvenile idiopathic arthritis (JIA)

Getting a diagnosis of juvenile idiopathic arthritis (JIA) can feel confusing, emotional, and even a bit scary. But you're not alone. We're here to help you lead the life you want, your way.

What is juvenile idiopathic arthritis (JIA)?

Juvenile idiopathic arthritis (JIA) is  a type of arthritis that affects children and young people under 16, and can continue into adulthood. There are different types of JIA which have different symptoms.

JIA is an autoimmune condition. An autoimmune condition means our immune system can get confused and start attacking our body's own healthy parts by mistake.

Our immune system is our body’s way of protecting itself against injury, illness or bacteria. Our body can defend itself by causing inflammation or swelling. But when you have JIA, your body creates inflammation in your joints when it doesn’t need to. This inflammation can then cause symptoms like stiffness and pain. 

We know there are at least 10,000 young people under 16 who have a diagnosis of JIA.

What are the symptoms of JIA?

JIA often causes joint pain and inflammation. A joint is where two bones meet or connect. You might have symptoms in any joint such as your:

• fingers
• hands and wrists
• elbows
• knees
• feet and ankles
• hips.

JIA can affect other parts of the body too, causing symptoms such as:

• swelling – joints looking puffy and feeling warm
• stiffness – especially in the morning or after resting
• tiredness or fatigue
• a high fever
• skin rashes
• blurry vision or dry eyes.

JIA can affect your body indifferent ways. You might be diagnosed with a subtype of JIA such as:

• Oligoarthritis – the most common type of JIA. It affects a few joints, often your knees and ankles.
• Polyarthritis – is less common. It usually affects 5 or more joints. It's like rheumatoid arthritis in adults.
• Systemic JIA – also known as Still's disease. It's a rare type that can affect your whole body, causing fevers and tashes.
• Enthesitis-related arthritis – You could experience pain in the bottom of your feet, around your hips, and in your knees or back.
• Psoriatic arthritis – Alongside other symptoms of JIA, you might experience psoriasis, a skin condition that cuses flaky patches of skin. This usually affects your fingers, toes and nails. The rash is not contagious.
• Undifferentiated arthritis – Your symptoms don't fit into any of the current types of JIA.

If you have JIA, you may get an eye condition called uveitis. Uveitis involves inflammation in part of the eye. Your team is likely to send you to an eye doctor called an ophthalmologist for screening.

Diagnosing JIA

Finding out which type of JIA you have isn't always easy, and over time that subtype might change. Symptoms can come and go, and everyone's experience can be a bit different.

To be diagnosed with JIA, you'll need to have:

• symptoms for 6 weeks or longer
• symptoms starting before your 16th birthday
• your doctor rule out other conditions that can cause symptoms in your joints.

There isn't a specific test for JIA and it can be difficult to diagnose. There are some tests or scans you might have. But not everyone will have the same tests done. You might see a few doctors before you are diagnosed with JIA.

For more information on JIA please see our Young people section.

Causes of juvenile idiopathic arthritis (JIA)

We don't completely understand what causes JIA. 'Juvenile' refers to young people under the age of 16. 'Idiopathic' means that other causes have been ruled out and there's no other explanation. 'Arthritis' is when a joint swells up, is stiff and gets inflamed.

JIA is thought to be due to a combination of factors but we don't fully understand the exact combination yet. It's not something you have done or caused. Although it can be frustrating not to know why you have JIA, there's lots you can do to manage your condition.

How will JIA affect me?

Some children and young people who have JIA won't have any symptoms when they're adults. You don't grow out of JIA, but you can go into remission. This means you might have times when you don't have symptoms of JIA or they're under control. But there are still lots of ways to manage if you do have active JIA.

How your condition affects you can vary from day to day or at different times of the day. The times when your arthritis is more active and affects you more can be known as a flare. If you notice an increase in your symptoms you should contact your healthcare team, as they might want to consider different treatments.

You can still work towards everything you want to do – there may just be some extra steps along the way. for instance, you might:

• find new ways to do things that work for you
• use different equipment for daily activities
• need adjustments at places like school or work
• attend different medical and hospital appointments
• struggle with your sleep
• feel more tired and not have a lot of energy
• struggle with how you feel, like feeling low or frustrated
• need to consider pacing and rest, particularly if your condition is flaring.

What medications are there for JIA?

There are lots of different treatments for JIA, and what treatment is best for you can depend on the type of JIA you have, as well as how your condition is affecting you at the time. Your doctor will be able to suggest what they think can help you, but it's important that you have your say in what you think is best too.

Even though we don't currently have medication that will completely cure JIA, there are many ways to manage the condition that will help you live your life, and live it your way.

You might be on a combination of drugs that aim to help your symptoms and try to put your JIA into remission. Some types of medication your doctor might prescribe for you are:

• painkillers, such as paracetamol
• non-steroidal anti-inflammatory drugs (NSAIDs), such as ibuprofen
• disease-modifying anti-rheumatic drugs (DMARDs), such as methotrexate
• steroids
• biologics and biosimilars.

Drugs and medication can come in different forms, such as tablets or injections. It can take a while to find out what works for you.

Tell your doctor if the treatments they've suggested aren't helping, as there will be other options you can try. There are new medications and treatments that we're learning about every day, and we're working towards a future free from arthritis.

Other treatments

Physiotherapy and occupational therapy

As well as your doctors, there are other specialists that can offer treatments to support you.

• Physiotherapists can help you manage movement by giving you a plan that’s designed for you. Your exercise plan can help make your muscles stronger and more flexible, which may improve symptoms like pain and stiffness.  
• Occupational therapists can help with different ways to improve or get back to doing things that are important to you that may be affected by your condition. These may be things in places like your home, work, school or college.

Physiotherapists and occupational therapists can work together to help you manage pain using a range of different strategies. This could be anything from supportive aids and stretching to distraction and play. They also help to develop your independence so that you can do more of what you want. 

It can sometimes feel uncomfortable doing things in a different way to others. But you deserve to be able to live your life in a way that works for you and not let your condition stop you. 

How can I manage my JIA?

It can take time to figure out the best way to manage your condition. Some things might work better for different situations. What works for you at home might be different to places like school, college or at work.

You're not alone in figuring out what works for you. You can ask your doctor or healthcare team for information and advice about managing JIA. You could also ask a trusted adult like a family member or teacher for support in finding ways to cope with what you're going through.

You can also pick up some great tips from our community of young people, such as Megan who has shared their story. Read Megan's story

We also have an online community for young adults aged 18+.

Taking care of our physical and mental health is also important in managing our condition and reducing symptoms like pain and stiffness. Try to:

• eat a balanced diet and stay hydrated
• get enough good-quality sleep
• move in ways that you can and enjoy
• make time for things you enjoy
• talk to others about how you're feeling
• ask for more support if you need it.

Adjusting to a new diagnosis and living with arthritis can be hard. If you're struggling, you don't have to do it alone. We're here to help and support you. We know how great it can be to chat to other people who understand what it's like to have arthritis as a young person.

Find out more about ways we can support you.