If you are a young person with arthritis (aged 13–20), then this booklet is for you. It is based on discussions with young people about their specific needs and the questions they would like answers to. It was written by a group of people, including doctors, physiotherapists, occupational therapists and nurses, who regularly look after young people with arthritis.

Arthritis in young people is known as juvenile idiopathic arthritis (JIA). We have tried to answer the main questions which young people ask if they develop arthritis. Of course, a small booklet like this cannot cover everything. It will give you basic advice and, as mentioned above, direct you to other sources of help, including other organisations and other useful Arthritis Ireland booklets. A glossary at the back of the booklet explains technical and medical terms. You can read the entire booklet below or click here to download a copy.

CONTENTS

• Part 1 – About JA  

What is Juvenile Idiopathic Arthritis (JIA)?
What Causes JIA?
Are All Joint Pains Due to JIA?
How Is JIA Diagnosed?
What Are the Different Types of JIA?
What Effects Can JIA Have on Your Body?
How Is JIA Treated?
Why Do I Need to Be Seen Regularly in Clinic?
What Happens to JIA in the Long Term?

• Part 2 – About transition

About Your General Health
How Can I Get Help?
How Does Having Arthritis Affect Transition?
The Changing Relationship with Your Doctor
When Should Planning for Transition Start?

• Part 3 – How to find out more

Benefits
Learning and Training
Driving and Getting about

Some Real-Life Stories
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PART 1 – ABOUT JIA
This section explains what JIA means as an illness affecting young people. It describes the main symptoms, the main types of JIA, and the different treatments.
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What is Juvenile Idiopathic Arthritis (JIA)?

JIA is the short name for juvenile idiopathic arthritis. Juvenile means that the arthritis began before you were 16 years old, idiopathic means that the cause is not known and arthritis means that one or more of your joints are inflamed – that is, they are swollen, painful, stiff and you may not be able to move them as far as normal. Even when you are over 16, doctors still use the term JIA as this type of arthritis is different from adult forms of arthritis.
The term JIA is relatively new and you may come across older terms, which mean essentially the same thing, such as juvenile chronic arthritis (JCA) and juvenile rheumatoid arthritis (JRA). The new term is now used by doctors worldwide to describe the different forms of arthritis in young people.
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What Causes JIA?

We do not know the exact cause of JIA. There is no clear evidence that it is inherited (runs in families) but there are certain genetic markers, which have been found more frequently in certain kinds of arthritis in children and adults.
There is no evidence either that an infection causes JIA. Sometimes children may have had a sore throat or other infection just before they become ill, but as yet no specific 'germs' have been identified.
We think that JIA is due to a combination of inherited (genetic) factors and factors from the environment, for example an infection that has not yet been identified.
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Are all joint pains due to JIA? No, not all joint pains are due to arthritis and not all forms of arthritis in young people are JIA. Joint pains are common in young people and in most cases are short-lived (particularly after a viral illness) and cause no long-term problems. In fact, in children and young people, arthritis is an uncommon cause of joint pain.

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How is JIA Diagnosed?

There is no foolproof test for JIA. It is diagnosed by the doctor asking questions and examining you, and by this process ruling out other types of illness. Your doctor will want to rule out other conditions that can cause joint pain. You may have a number of tests including some of those listed below.

Blood tests
Haemoglobin – a test for the red blood pigment haemoglobin. A lack of this is called anaemia
Erythrocyte sedimentation rate (ESR) – this is one type of test for inflammation.
Autoantibodies – these are proteins in the blood that are present with types of arthritis but can also be found in some healthy people. Rheumatoid factor is an autoantibody, which is found in most adults with rheumatoid arthritis, but is rarely found in children. It may be found in some teenagers with polyarthritis (arthritis in many joints). Antinuclear factor is another autoantibody that, if present, can increase your risk of uveitis, which is inflammation of the eye (see 'What effects can JIA have on your body?').

X-rays (radiographs)
X-rays of the affected joints are usually needed to allow the doctor to look for or assess any joint damage that you may have.
Ultrasound scans and magnetic resonance imaging
Ultrasound scans (similar to scans of babies in pregnant mums) and magnetic resonance imaging (MRI) are other ways to look at your joints.
Aspiration of a joint
Sometimes it is important to remove the fluid from an inflamed joint and test it, especially to check for possible infection. This can be uncomfortable and, if you are younger, it is usually done under sedation (sedation is when drugs are given to make you sleepy).
Other tests
Sometimes, you may need to have other tests such as a chest x-ray, a heart scan (called an ‘echo’) to look for inflammation of the covering of the heart (pericarditis), or a bone scan to check for inflammation in the bones.
Further reading: Arthritis Ireland’s booklet 'When A Child has Arthritis'.
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What are the different types of JIA? There are several different types of JIA and these are described below. It is important to know which type you have as some types are milder than others and this will help your doctor to plan your treatment and give you advice on the likely effects of your arthritis. Doctors describe different forms of JIA by the number of joints and the pattern of joints involved and whether there are other problems such as a fever or rash.

Oligo-articular-onset JIA (sometimes called pauci-articular-onset JIA)
This is the most common form and is the name given when only a few joints are swollen ('oligo' or 'pauci' meaning 'few' and 'articular' meaning 'relating to the joints'). It affects about two-thirds of children with arthritis and most commonly affects one or both knees.
Oligo-articular-onset arthritis is most common in the pre-school-age group (under 5) and girls are affected more than boys in this age group. This form of arthritis is often mild and has the best long-term outcome. That is, it is the most likely to go away and to leave little or no damage to the joints. However, please note that this type of arthritis has the highest chance of developing uveitis (inflammation of the eye), as explained in the section 'Eye inflammation', and so regular eye checks with an ophthalmologist (eye specialist) will be an important part of your treatment plan.

In older children (for example age 8 and above), oligo-articular-onset arthritis is more likely to affect boys and may go on to cause stiffness in the neck and lower back in your teens, or as a young adult. Often such children also have inflammation around their joints, arising from places where tendons attach to the bone (these places are called entheses). This is often called enthesitis-related arthritis. As mentioned above, young people with JIA may also develop uveitis (see the section 'Eye inflammation') which, in the over 8-age group, tends to produce a painful red eye. A blood test may show that you have a genetic marker for this sort of arthritis (a marker called HLA-B27).

Polyarticular-onset JIA
This is the next most common type. Polyarticular JIA (or polyarthritis) means that many joints are inflamed ('poly' meaning 'many' and, as mentioned above, 'articular' meaning 'relating to the joints'). Polyarthritis can begin at any age but typically, two peaks are noted, one during the toddler years and the other in the preadolescent age group. It is more common in girls and can be similar to the adult-type rheumatoid arthritis. A very small proportion (5%) of people with this form of arthritis may have a blood marker called rheumatoid factor, which can be found by a blood test.

This type of JIA tends to affect fingers, toes, wrists, ankles, hips, knees, and the neck and jaw. It may come on suddenly or can steadily involve more joints over a period of months.

Extended oligo-articular JIA (sometimes called extended pauci-articular JIA)
With this form of JIA, you have oligo-articular JIA in the first 6 months and then develop problems with many joints after that (that is, it becomes polyarticular). This type of JIA can cause damage to your joints and your doctor may suggest early treatment with drugs like methotrexate to keep this damage to a minimum.

Psoriatic arthritis
Psoriasis is a scaling skin rash and with this you can also get arthritis. The joints may be affected before the skin rash appears – your doctor may look closely at your fingernails and toenails for early signs of psoriasis and may ask if any members of your family have psoriasis.

Systemic-onset JIA
This is the rarest type of JIA. It can affect children and young people at any age, with boys affected as much as girls. In this form of arthritis, joint pain is part of a general illness involving fever, rash, loss of appetite and weight loss. You may have enlarged glands in the neck, under the arms and around the groin area. Your spleen and liver may be enlarged, and the doctor will feel for this when examining your tummy, although you may not have noticed it yourself. Very occasionally, the covering of the heart is inflamed (pericarditis). In the first few weeks, there may be no sign of swollen joints, and the diagnosis may be uncertain. Lots of tests may be needed to confirm the diagnosis and this can be a worrying time. The long-term development of this form of JIA can be difficult to predict but usually the fever and rash will settle and the arthritis may sometimes grumble on for several years before settling.
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What effects can JIA have on your body? Many young people with JIA feel well, fully active and have normal growth and puberty (the process of the body reaching sexual maturity). Sometimes, though, having arthritis can cause problems with everyday activities like walking, bending, getting dressed or washing yourself, and can have an effect on your general health and development.

Varying symptoms
Your symptoms of arthritis can vary from day to day. Inflamed joints (when the arthritis is 'active') can be warm to the touch – they may look red and swollen and be painful to move. Typically you will feel stiffer in the mornings and after periods of resting. Flare-ups (where the arthritis gets worse) can happen after viral infections, stress, changes in the medicines you take, or sometimes for no apparent reason. Sometimes arthritis stops being active – that is, the joints no longer feel warm, look red or are swollen – but they may still be painful and limit your ability to do things.

Eye inflammation
Uveitis is inflammation of the eye and this can happen with JIA. This risk is less in teenagers and young adults than in children but if it does develop and persists it can cause blurred vision or even loss of vision. Uveitis in children, typically does not always cause pain or a red eye and may only be picked up by frequent checks by an ophthalmologist (a doctor specialising in eye problems), who will check your eyes with a slit lamp (a special type of torch with a bright light) to see if you have uveitis or not. It is important to tell your doctor about any changes you notice in your eyes.

General health
Having arthritis can affect your general health. Flare-ups can reduce your appetite, may cause anaemia, and make you feel 'run down' and tired. You should take care to clean your teeth regularly and properly to prevent tooth decay (caries) and gum disease.

Osteoporosis
Osteoporosis (thinning of the bones) usually causes problems in older people but can develop in children due to medications or joint inflammation that is not under good control. We know that diet, exercise and general health in childhood and adolescence are very important in strengthening your bones. It is important to take steps when you are young to help prevent osteoporosis. You should try to exercise every day (walking is good!) and eat dairy products (for example milk, cheese, yoghurt).

Puberty (reaching sexual maturity) and growth problems
Most people with arthritis grow normally and have normal puberty. Sometimes, though, having arthritis and being on steroids can slow your growth and make the changes of puberty happen later. In girls, the start of your periods can be late and, once they start, they may not be regular, especially if you are taking methotrexate. The effect on growth and puberty may be seen in all types of JIA. This can be upsetting and make you feel different from your friends or classmates. However, in most cases of JIA, puberty does happen normally. And it is important to remember that if your growth is slower than normal, it can often catch up later, and especially when the arthritis is well controlled. It is important to talk to your nurse or doctor about any concerns you may have about your growth.

Parenthood
Most young people with arthritis can have healthy babies and enjoy parenthood normally. It is worth remembering that:
The risk of your baby having JIA is extremely small.
You will be advised by your doctor not to become pregnant or father a child while you are on methotrexate. However we know that if you have been on methotrexate in the past, then there is no reason why you should not be able to become pregnant and have (or father) a healthy baby after you have been off methotrexate for a suitable period of time.
If you are planning to become pregnant or planning to father a child then it is important that you stop taking methotrexate because this drug can damage sperm in a man and eggs in a woman and may cause serious harm to the developing baby. Your doctor will advise you to be not taking methotrexate for at least 3 months before you try to become pregnant or try to father a child (some doctors may advise that you are off methotrexate for up to 6 months).
You should discuss with your nurse or doctor any concerns you may have about pregnancy or about being a parent when you have arthritis.
Further reading: see the sections 'How is JIA treated?' and 'A healthy lifestyle'.
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How is JIA treated?

The aim of your treatment is to: 

• control the symptoms of arthritis (pain, stiffness, and swelling)
• enable you to lead an active life at school or college
• enable you to enjoy an active family and social life
• enable you to do as well as you can at school
• help you become an independent adult.

It is important to do all of these things but at the same time try to reduce any side-effects caused by the medicines.
There is a great deal of research into the treatment of arthritis and several new medicines are being developed. You need to be aware of the main types of treatment and the areas in which you can help yourself as shown below:

• medicines
• physiotherapy and occupational therapy
• joint surgery (orthopaedic surgery)
• general health and healthy lifestyle (e.g. diet, sleep and exercise)
• 'natural' and 'complementary' treatments.

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MEDICINES

Medicines cannot 'cure' arthritis, but they can control the symptoms and help to reduce the possibility of joint damage. An increasing number of medicines are now available:

Non-steroidal anti-inflammatory drugs (NSAIDs)
These often help to reduce the pain, stiffness and swelling of arthritis. There are many different NSAIDs, for example naproxen, ibuprofen and diclofenac. You have to take them regularly to get the maximum effect and their effect lasts hours not days. Side-effects can include indigestion and other side-effects. You can lessen the indigestion by taking the tablets along with food. If you get indigestion then you should report this to your doctor.

Painkillers (analgesics)
These help to control the pain of arthritis. Common drugs include paracetamol, codeine, or combinations e.g. co-codamol. They have to be taken regularly to get the maximum effect and their effect lasts for hours not days. Side-effects include constipation, drowsiness, or feeling a bit ‘spaced-out'.

Corticosteroids (prednisolone)
These are also known simply as ‘steroids’. They control inflammation and the pain, stiffness, and swelling of arthritis very well. They work quickly over a few days. Short courses (for a few days or up to a week) or low doses tend to have few or no side-effects.
Side-effects with large doses and with longer courses (over weeks and months) can include weight gain, slowing of growth, high blood pressure, easy bruising and osteoporosis (thinning of the bones), and these drugs can increase the risk of infection. Your doctor will aim to limit these side-effects by prescribing low doses and only for a short time, and if you are still growing then s/he may suggest that you take prednisolone in the mornings every other day to give you a greater chance of being as tall as you should be. There is a risk of infection (probably very small) if you have body piercing (e.g. belly button) and are on steroids with or without other medicines for your arthritis, so please check with your nurse or doctor if you are thinking of having a piercing.
Corticosteroids can be given as tablets, by injection into the joint or into the muscle, or by a drip into a vein. Joint injections of steroids are very effective for many months, are very safe, and cause very few side-effects.
If you are prescribed steroids, then your doctor should give you a steroid card (which tells people that you are on steroids). Always carry this with you.
Steroids should NEVER be stopped suddenly (except if you have only been on them for a short time – under 2 weeks) as you can become very ill.
To help reduce the risk of osteoporosis you should eat more calcium-rich foods (e.g. semi-skimmed milk, cheese, tinned fish such as sardines including the bones) and do regular weight-bearing exercise such as walking. Your nurse or doctor can give you information sheets about your diet and discuss ways to boost your calcium intake. Your doctor may suggest that you take calcium supplements.

· The risk of chickenpox 

Chickenpox can be more severe if you are taking corticosteroids (or methotrexate). If you have not had chickenpox (or are not sure) then it is important to discuss this with your doctor or nurse. They will give you advice about what to do if you come into contact with someone who has chickenpox or shingles or if you get chickenpox. You may also be able to have a vaccine against chickenpox. 

·   Avoiding certain vaccines 
All young adults are offered vaccines to protect against certain infections and these are very important. However, you must not have certain live vaccines if you are taking corticosteroids (or methotrexate) – these include vaccines against rubella (German measles) and BCG for tuberculosis (TB). However, most other vaccines are safe and very effective in protecting you against serious diseases, and it is a good idea to have them – for example meningitis and influenza vaccines. Check with your nurse or doctor. Also, it is always important to check what vaccines you will need if you are travelling abroad. Again, discuss this with your nurse or doctor.

Disease-modifying anti-rheumatic drugs (DMARDs)

These drugs dampen down inflammation and they can reduce the joint damage caused by arthritis. Also, importantly, by helping to control your arthritis, they may allow your doctor to reduce the amount of steroids that you need to keep well (and that means a smaller risk of steroid side-effects).
Methotrexate and, to a lesser degree, sulfasalazine, are the most commonly used DMARDs in JIA. They appear to be very effective, with many patients going into remission (with no active arthritis) and feeling very well. These drugs are slow to become effective and you may not notice any benefit for several months. Side-effects of methotrexate and sulfasalazine are rare but regular blood tests are needed.
Methotrexate is usually given as a tablet just once a week, although some people are given methotrexate as an injection into the skin or muscle. Folic acid (a vitamin supplement) is usually given to help reduce side-effects.
Sulfasalazine is given as tablets taken every day.
If you are on methotrexate then a few points are worth stressing:

· Avoid drinking alcohol
Alcohol makes your liver more sensitive to the effect of methotrexate and there is a danger of damaging your liver if you drink too much alcohol while on methotrexate. Your doctor or nurse may advise no alcohol at all but, in reality, many young people do drink alcohol without apparent side-effects with their liver. A sensible compromise is a maximum of 4 units a week. A unit is half a pint of ‘ordinary’ strength lager, cider or beer, or a single measure of 35ml of spirits, but the units vary a lot between different alcoholic drinks, so ask your nurse or doctor for advice. It is not advisable to drink all 4 units at one time within the week.

· Don't become pregnant
If you have sex, you must use reliable contraception if you are on methotrexate (whether you are male or female). This is because, as mentioned above, methotrexate can cause damage to an unborn baby. If in the future you want to become pregnant or father a child then methotrexate should be stopped for at least 3 months beforehand (and some doctors advise 6 months). Discuss this with your doctor or nurse.

If you do have sex without adequate contraception (i.e. unprotected sex), then you should seek advice urgently from either your nurse or your GP. Remember the 'morning-after pill' is available and can be used up to 72 hours after you have sex (though it is more likely to be effective if taken within 24 hours).
It is also important, of course, that if you are having sex you protect yourself against sexually transmitted infections – condoms are an effective way of doing this (and are also a useful form of contraception). You can discuss this with your nurse or GP.

· The risk of chickenpox
Chickenpox can be more severe if you are taking corticosteroids, either with or without methotrexate. If you have not had chickenpox (or are not sure) then it is important to discuss this with your doctor or nurse. Please see the advice on this subject in the ‘Corticosteroids (prednisolone)’ section.

· Avoiding certain vaccines
All young adults are offered vaccines to protect against certain infections and these are very important. However, you must not have certain vaccines if you are taking methotrexate (or corticosteroids). Please see the advice on this subject in the ‘Corticosteroids (prednisolone)’ section.

Biologic response modifiers

Biologic response modifiers, commonly known as anti-TNF drugs, block the action of a chemical called tumour necrosis factor (TNF). They include etanercept (Enbrel), infliximab (Remicade) and adalimumab (Humira. Research on the drugs has been very promising, but they are not appropriate for everybody with arthritis. They can offer new hope to some people who have not been helped by other disease-modifying drugs.

Does it matter if I miss a dose of my medicines?
It depends on what medicine you miss.
NSAIDs and analgesics – missing the odd dose will make little difference but you may feel a little more stiff and sore.
Methotrexate or sulfasalazine – missing the occasional dose will make little difference. But after several missed doses, you risk a serious flare-up in your arthritis.
Steroids – these should NEVER be missed as you can become ill very quickly. If you do forget to take a tablet or if you are sick (vomit) within an hour of taking your regular dose, then repeat the dose as soon as you remember. If you forget to take steroids over several days you may feel dizzy and have headaches and/or abdominal pain, and you must tell your doctor immediately. Carry your steroid card with you at all times (e.g. in a wallet or purse) – this will help to remind you and, importantly, others if you are too unwell to tell someone else (for example, if you were in an accident and needed to be treated by a doctor who does not know you).
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PHYSIOTHERAPY AND OCCUPATIONAL THERAPY

When you have arthritis you may experience pain, swelling, stiffness, restriction of movement of your joints or weakness of your muscles. These problems may cause difficulties with everyday activities with your family and friends, at home, school, college or work.
Physiotherapy and occupational therapy can help your arthritis, can relieve pain, improve your ability to get on with life, and provide exercises to stretch soft tissues and build up muscles and improve your heart and lung fitness.
Your therapists (physiotherapist and occupational therapist) will assess you and will develop a programme for your individual needs and give you advice about equipment, joint protection and gadgets and adaptations available to help you.

Pain relief
There are various ways to relieve pain, such as heat, cold, TENS, acupuncture, massage, hydrotherapy and relaxation.

Exercise
As a general rule you should try to exercise each day.
Your general fitness will be helped by regular exercise, especially swimming. Weight-bearing exercise (such as walking) will help prevent osteoporosis and help you keep fit. Other weight-bearing exercises such as running, dancing or racket sports should also be suitable for you. You can ask your doctor, nurse or therapist for advice on this if you are not sure. 
Your therapist may advise other exercises to increase the flexibility and strength of muscles, which may help prevent damage to the joints and maintain or increase the range of movement.
Try to set aside 15–20 minutes each day to 'work out'. This does not need to be too energetic but you should check that each joint in your neck, spine, arms and legs moves fully. As your arthritis becomes controlled and your general fitness improves you can make the exercises a bit harder (for example by using weights – however see below).
It is best not to use free weights without first getting advice from your physiotherapist, but instead to use equipment such as a multigym where the weights are controlled.
If you have a 'flare' or a specific joint problem your physiotherapist will help you to improve or regain your strength.

Posture
For the body to work efficiently, a good upright posture is important. This means keeping the muscles strong enough to keep the back straight, with the shoulders relaxed but held back and the head up. This is particularly important when you are sitting using a computer.

Splints and insoles
The use of splints to rest or protect a joint may be needed. The wrist joints are often a problem as your written and computer work at school increases. Splints for the wrist will help to stabilise the joint and give support to allow you to keep going for longer periods. Combined ankle and foot splints will assist weak ankles and hold the heel in a good position. Insoles will give added support to the foot and ankle and can often help to relieve pain in the knees and hips.

Joint protection (avoiding certain types of strain on the joints)
It is important to be aware of joint protection even if your arthritis is well controlled. The muscles and soft tissues, which hold your joints in place, can be put under strain as you use them. Use support for the joints if necessary and ensure that your muscles are as strong as possible.

Washing and grooming
Stiffness and pain in your joints or weakness of your muscles may mean you have difficulty in reaching some parts of your body. Equipment can be bought to help with this so that you can manage your daily routine of toilet and grooming. For example, a hairbrush can be adapted by adding longer handles or larger grips. The occupational therapist can give advice and provide equipment to help you be independent – for example, an aid to get in and out of the bath, if necessary.

Clothes
It is important that you can wear the clothes and shoes that you like. Sometimes difficulties with dressing can be overcome by using Velcro fastenings and elastic. Again, the occupational therapist should be able to advise you.

Mobility
Walking is a good exercise and is an important part of life, allowing you to join in with everyday activities such as shopping with family and friends. Most young people with JIA have normal mobility. However, it is important to allow extra time to get from place to place especially if you have to use stairs. There are times when crutches may be needed to help with walking, allowing you to maintain your independence. If you find walking distances becomes a problem then a wheelchair may be used. To ensure you get the right wheelchair for your needs an assessment will be necessary. Remember that a wheelchair is to aid your mobility, not a replacement for it.
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CAN JOINT REPLACEMENT SURGERY HELP TREAT JIA?
Occasionally JIA can result in joint damage that can cause pain and difficulties with daily activities, for example walking. Joint replacements are now a very successful treatment for adults with arthritis. They are very effective in relieving pain and improving mobility and can last many years. In a young adult, joint replacement surgery is very effective but is much less common, so you may be referred to a specialist centre if joint replacement surgery is needed. 
Further reading: Arthritis Ireland booklets‘Surgery and Arthritis’, 'A New Knee Joint' and 'Hip Replacement'

A HEALTHY LIFESTYLE

Everyone can improve their general health through healthy eating, regular exercise, getting enough sleep, not smoking, and avoiding illegal drugs and too much alcohol.

· Does exercise help my arthritis?
As mentioned in the earlier information on exercise, every day you should work your muscles and joints to maintain the flexibility of the body and improve strength and stamina. Exercise is important for the general fitness of your heart and lungs, and it protects against osteoporosis and helps you to relax. Regular exercise and sports should be enjoyable and are a great way to meet new friends. Most sports are suitable for you to join in (and swimming is especially so) but you can ask for advice from your doctor, nurse or therapist.

· Can changing my diet help my arthritis?
Generally speaking you should aim for a well-balanced diet with plenty of fruit and vegetables and a high fibre content, avoiding too much fat. You should also have lots of calcium-rich foods (for example milk, cheese, tinned fish including the bones) to help prevent osteoporosis. There are lots of 'old wives' tales' about diet and arthritis – these are often unproven. Be careful not to have a diet that is short of vital foodstuffs – this can cause problems in itself (such as anaemia).
Further reading in this booklet: Part 2 – About Transition.
Further reading elsewhere: Arthritis Ireland’s booklet ‘Healthy Eating and Arthritis',

WHAT ABOUT 'NATURAL' OR 'COMPLEMENTARY' THERAPIES?
There are many people who make claims for certain treatments that are not 'conventional' medicines. Some of these may be helpful, but there is little evidence to support their use in everyone with JIA. The internet has lots of information on many products. Be cautious – many products are advertised heavily and can be very expensive – and may well not work. Discuss your queries with your doctor or nurse.
Further reading: Arthritis Ireland booklets ‘Healthy Eating and Arthritis’ and 'Drugs' and 'Complementary Therapies'.

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Why do I need to be seen regularly in clinic?

The rheumatology team will want to see you regularly to ask how you are and examine your joints (you may want to wear shorts and a t-shirt to be examined in). They may also want to do tests to make sure that the medicines are working for you and to check for any side-effects of these or any problems associated with the arthritis itself. It is important for the doctor to check on your general health including growth (height and weight) and enquire about changes of puberty. Your clinic visit is also an opportunity for you to ask questions. The rheumatology team may well be able to help you with any concerns you have about school or college work and will be keen to discuss your plans for the future.

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What happens to JIA long term?

In most cases, children's arthritis has a good outcome, with 60-70% of people having no problems as adults. You should look forward to a future that is no different from those of your friends and classmates. Many young people with JIA achieve highly, with good jobs and satisfying, fulfilling lives.
In about 40% of cases, arthritis can remain active into adult life. Some young adults with JIA have joint damage that limits their daily activities to some extent and a few may need joint replacements. Other problems can sometimes occur. Some people are physically smaller than average or have osteoporosis as a result of their arthritis and/or treatment with steroids.
A successful outcome in JIA requires many things. How you approach it can make a big difference. You need to be looked after by a team experienced in dealing with JIA working with your family doctor. Just as important, though, you need a caring, helpful environment with family, friends and teachers, as well as health professionals. You also need to know how to get help that you can understand, know who to approach and be confident enough to ask for support and advice.
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PART 2 – ABOUT TRANSITION

Transition is the term used to describe the many changes, which take place between being a child and developing into an independent adult. It is the broad term used to describe the process of moving your medical care from a paediatric setting to an adult setting. The so-called 'tasks of transition' are the same whether you have arthritis or not and include:

 

• developing your personal and sexual identity
• becoming independent from your parents or parent figures (this includes taking responsibility for health, medications, education, managing money matters, being able to 'stand up for yourself', being independently mobile and running a home)
• developing relationships outside the family
• planning for the future, including finding a job or career.

These tasks of transition can be difficult for every young person whether they have arthritis or not. The process takes many years. Often much of it takes place in the so-called adolescent years between 12 and 19 years of age, but it varies from person to person. Some of the tasks may go on into your twenties.
This section discusses how JIA can affect the way you make the transition into adult life. You need to think about a range of issues, as suggested above, including your general health and lifestyle, your plans for adult life and your relationship with your doctor.
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About your general health

Adolescence is an exciting time when you go through many changes – in the way your body looks, what is happening at school and in your social life. Arthritis can affect many of these changes and these changes can affect your arthritis. Your rheumatology team will be interested in any concerns or worries you may have in these areas. One way the rheumatology team remembers to ask about these things is to use the term 'HEADS' as a simple checklist (Home, Education, Activities, Drugs, Sex), as in the headings below.

Home
As you grow up, your relationship with your family changes. Sometimes this happens without any problems but sometimes there may be tensions and disagreements – the 'storm and stress' of adolescence. Your family can be valuable allies and it is important to keep talking to them, even if you don't agree all the time!
Most young people will want to leave home and set up their own home. In order to do this, it is important for you to learn how to become independent and confident in looking after yourself. You may need help from others to achieve these goals, as may your parents who can find it difficult to 'let go'. Sometimes they too need some patience and understanding!

Education (and beyond)
'What do you want to do when you grow up – and how are you going to make it happen?' This is a very important question and a good education is a very important part of the answer. Teachers, careers counsellors, occupational therapists or Disability Officers are key people for advice in this area. However, education is not the only factor to be considered – there are other important aspects to preparing for the world of work:
learning to speak up for yourself being aware and knowledgeable about arthritis and how it affects your life gaining work experience becoming independent at home, at school and in your health care.

 
Activities
Friends outside your family circle become increasingly important the older you get – a happy social life is important for your self-esteem and well-being. Learning to drive may help you to be less dependent on your family (e.g. for lifts) and will also help when you become an independent working adult.
Keeping as physically fit as possible is also important – doing some form of exercise, ideally every day, is important for all young people whether they have arthritis or not. Weight-bearing exercise (walking, running and so on) is particularly important to protect against osteoporosis later in life. 

Drugs
Adolescence is the time when many people first come across alcohol, cigarettes and illegal drugs. You may feel tempted or pressurised to try them out. It is important for you to understand the risks of these and the side-effects on your health if you do decide to try them. Illegal drugs and/or alcohol can interact with the medicines used for arthritis. For example, you should not drink more than 5 units of alcohol per week when you are taking methotrexate (see section 'Avoid drinking alcohol').
If you have any questions or concerns in this area there are many sources of information and people who will listen in confidence, including your rheumatology team – so please ask.

Sex
As you grow up, you become aware of your own sexuality. Sometimes this causes worries for you and may be difficult to talk about. You may be concerned about looking different from your friends and worry about forming relationships and being attractive. You may worry about whether joint pain or affected joints will cause problems physically with having sex. Concerns like these are often helped by talking to someone in confidence. From a practical point of view, for example, comfortable positions to use during sex can be suggested which are good for both partners, with and without arthritis.
If you are having sex, it is important to practise safe sex and use condoms. As well as preventing pregnancy, these can protect you against sexually transmitted infections including HIV, chlamydia, syphilis and gonorrhoea. If you are on drugs like methotrexate, contraception is vital as these drugs can cause harm in an unborn baby (see the earlier section ‘Disease-modifying anti-rheumatic drugs’). For all women who are sexually active regular cervical smears are important. The rheumatology team will be willing to listen to any concerns you have relating to your sexual health, and to give helpful advice. Don't be afraid to ask.
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How can I get help? It is important that you feel that the issues above can be discussed with someone who will listen in confidence and not be judgemental in their advice. The person or people you choose to confide in will depend on your individual circumstances. However, think about talking to a member of your rheumatology team (doctor, nurse, or therapist) or your school/college nurse, doctor or tutor.
The school/college nurse and doctor should be told that you have arthritis; this will help the school to understand the illness and any problems you may face now or in the future. It is important that your views on who should tell your school are considered. This could be done by you, your parents, your rheumatology team or your GP. The school nurse and doctor will also be able to give advice on general health issues such as diet, skin, hair, teeth, weight problems, sexual health, contraception, bullying, and smoking. They can discuss issues with you in confidence, and should ask you if you want your parents to be informed.
Remember you can register with a GP in your own right when you are 16 years old. Whether you are under or over 16, what you tell your GP (or other doctor) is confidential, although the GP may encourage you to discuss these issues with your parents. However your parents will not be informed about confidential information unless you give the doctor permission to do so. There are certain exceptions to this rule in certain extreme circumstances (such as if the doctor thinks you are in danger, for example because you are being sexually abused), but if you are in any doubt ask your doctor beforehand what the practice policy is in relation to confidentiality. 

Further reading in this booklet: see the earlier section 'How is JIA treated?' (covering medicines, physiotherapy, occupational therapy, diet and exercise).
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How does having arthritis affect transition?
For many young people with arthritis the transition will happen 'normally'. But for some young people, arthritis may persist into adult years from childhood, or arthritis may develop in the teenage years.
Having arthritis when you are a teenager or young adult can seem especially tough. At this age, apart from having to cope with the arthritis and its treatment, you are also faced with a very important time at school or college, with decisions to be made about career choices. Of course you are also facing many changes in your body, and developing new relationships with friends, and perhaps also sexual relationships.


What sort of problems can it cause and how can they be dealt with?
Having arthritis as a teenager or young adult may limit your lifestyle because of physical problems, for example not being able to walk far and having to rely on others such as parents for transport when friends are taking the bus or train independently.
You may be anxious about developing relationships because you feel you look 'different'. You may feel that your social life is affected because of the restrictions on drinking alcohol if you are taking methotrexate. You may feel singled out for 'special' attention by teachers, parents and doctors, and this or the arthritis may mean that you miss time from school, college or work.
Planning your future can be difficult because of uncertainty about how your arthritis affects you. Your education may be affected if you miss school or college through being unwell at times. Remember, though, that most people with JIA do get through education successfully, and investing effort in school or college work can help you for a number of years in adult life by giving you more options in terms of work or further studies.
Occasionally there might be problems with bullying at school. If you are being bullied it is important to discuss such problems with friends, your parents and your teacher. This often stops the bullying quickly and with little fuss. Do not let the problem linger.
Sometimes young people stop taking their medication, wearing their splints and doing their exercises. Even if you are tempted to do this, please don’t, as it is likely to make your arthritis worse.
There are ways of dealing with problems like these and they can be overcome, especially with help and support from other people. Although teenagers without arthritis may not realise their good luck, remember that they too may be having a difficult time and may be struggling with many of the same problems as you.

Who can help?

Your doctor, nurse and therapists are often aware of many of the concerns you will have and will welcome you asking for advice; there is a lot of help available, much of which is mentioned in this and other booklets.
It is very important that you discuss concerns with your rheumatology team, other health professionals or a tutor/teacher – they may be able to help directly or point you in the direction of someone who can help.

Arthritis Ireland supports young people with arthritis though its JA Programme. People under the age of 18 can stay connected via our Juvenile Arthritis Bebo Page, JasperIreland. CHAT (Children have Arthritis Too) is our online chat room for young people (13-18) growing up with arthritis. This monitored chat room is a unique forum to share thoughts and views. Further information is available from the Juvenile Arthritis Section of our website or by emailing ja@arthritisireland.ie
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The changing relationship with your doctor

As you grow older, your relationship with your doctor changes. As a child, your doctor would have tended to talk about you to your parents. You probably did not have much say in deciding about your treatment, and your parents were responsible for your health care. As an adult you are expected to see a doctor on your own, explain your problems, understand the explanations and treatments given, and be responsible for your appointments and taking medication.
Transition involves this changeover of roles – you take on more responsibility for your own health care and your care is transferred from a children's department to an adult rheumatology department. This may involve a change of doctor, physiotherapist, occupational therapist, nurse, and usually a change of hospital, maybe in a different town or city. All this change can be difficult for you, your parents and your doctor.
You will probably need to discuss with your parents when you want to see the doctor on your own. Many parents have difficulty in 'letting go' and you may want to see the doctor with your parent(s) present for a few times, with your parents taking a 'back seat', before you see the doctor alone.
It is important that you know as much as you can about your arthritis, the treatment options and the likely outcome of your arthritis. Patient education is a very important role of the rheumatology team and you should feel free to ask questions. This should help build the relationship between you and your doctor. This relationship needs to be open, frank and with both sides able to discuss issues in a friendly manner, and with you being involved in the decision-making process. You should expect the opportunity to ask questions and understand the replies. All this takes time – it may not always be possible in a busy clinic – but at least you should be told about how to get more information.
If you are better informed, you will feel more in control. This usually means you cope better with your arthritis and are able to plan your future with greater certainty.
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When should planning for transition start? Planning for transition needs to start early (ideally as soon as possible once arthritis has been diagnosed), and needs to be carefully co-ordinated between you, your family, your school and the rheumatology team. Transition is a gradual process that occurs within the day-to-day activities of family life, and school life. The transition process varies from place to place.
Ideally, the plan for transition should be a written plan: Your paediatric rheumatology team should be responsible for drawing it up, and ideally you and your family should be involved. You should be given a written copy when it is done. The transition plan should include details of the adult rheumatology team, the hospital, plans for monitoring of medication and an approximate date for transfer to adult health care.
It is important that you and your doctor discuss your future. Your doctor may be able to give advice on how your arthritis may be in the future – information that is vital to planning your higher education, career and work.
If you have arthritis, the school – and your timetable and routine – may have to be adapted to allow you to get to and around school. Your physiotherapist and occupational therapist will often give advice on this.
Your transition plan is assessed on a yearly basis and should be completed prior to transfer to the adult services. Your doctor will be able to give you a copy of your records as well.

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PART 3 – HOW TO FIND OUT MORE 

This section offers practical advice and sources of further information if you are looking for help with benefits, learning and training (including further and higher education), work, and driving.
A great deal of information is available but some of it is complicated (especially when it’s about money!). However, you should find the pointers in this section useful.
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Benefits

The doctor or other professionals treating you may have as much difficulty as anyone else in knowing what benefits you are entitled to. You can help them by being well informed, for example by following the suggestions below.

REMEMBER

• many of the benefits do not start until you are 16.
• some benefits are the gateway to several other benefits.
• if your circumstances change (for example if you enter further/higher education) benefits may change.
• benefits may be available to help you continue education.
• some benefits depend on how disabled you are.
• some benefits are 'means-tested' and are paid to you if you don't have enough money to live on.

Domiciliary Care Allowance
Domiciliary Care Allowance is a monthly allowance paid to the parent or guardian of children or young people under 16 who have a severe disability requiring continuous care and attention. The means of parents are not considered. Only the personal means of the child or young person are taken into account. This allowance will not affect Child Benefit, Carers Benefit or Carers Allowance. Applications should be made to the Department of Social and Family affairs, through your local Social Welfare Office - LoCall: 1890 927 770.

Disability Allowance
If you are 16 or over your main benefit may be the Disability Allowance. This allowance is means tested and you will have to undergo a medical examination as part of the application process. Applications for this should also be directed through your local Social Welfare office - LoCall: 1890 927 770. If you are awarded Disability Allowance, you get a Free Travel Pass automatically. This allows you to travel for free and your spouse or partner to travel free in your company. If you are medically assessed as being unable to travel alone you may be entitled to a Companion Free Travel Pass.

Social Insurance Payments

·  Illness Benefit: Illness Benefit was previously called Disability Benefit. This is a short-term payment made to people who are unable to work due to illness. It can be paid in the long-term. To qualify you must be aged under 66 and unable to work because of illness. Your PRSI contributions or credits must be up to date.
· Invalidity Pension: Invalidity Pension is payable for as long as you are unable to work. At the age of 65, the personal rate of payment increases to the same rate as State Pension (Transition). At age 66 you transfer to the State Pension (Contributory).

Other benefits: Living Alone Increase is payable regardless of age if you live alone. You may also qualify for free travel and the Household Benefits Package, which includes allowances towards household bills.

Rehabilitative work: You may be allowed to do rehabilitative or therapeutic work (maximum 20 hours a week) and retain your Invalidity Pension. You must get prior written approval from the Department of Social and Family Affairs before you start work.

· The Treatment Benefit Scheme: A scheme run by the Department of Social and Family Affairs that provides dental, optical and aural services to people with the required number of PRSI contributions.

 

Health Service

· Medical Cards: Most medical cards are granted on the basis of a means test and/or medical need. Each case is decided on its merits but you may qualify if your income is not much above the guideline figure and your medical costs are exceptionally high. It may be possible for one or more members of a family (who would not otherwise qualify) to get a medical card in their own right if they have high medical expenses or needs.
· GP Visit Cards: The purpose of the card is to help people who are not eligible for medical cards with the costs of visiting a doctor. The card covers you for GP visits but nothing else. The income guidelines for the GP visit card are 50% higher than the medical card income guidelines.
· Drugs Payment Scheme: With a Drugs Payment Scheme (DPS) card, an individual or family in Ireland only has to pay a maximum amount monthly for approved prescribed drugs, medicines and certain appliances. As of January 2009, the maximum amount a family must pay is €100. Everyone in Ireland who doesn’t have a medical card should apply for the DPS card.
· Hospital Charges: Everyone resident in Ireland is entitled to be treated free of charge in a public bed in a public hospital. Some people may have to pay maintenance charges. Out-patient services, when you are referred by your GP, are also provided free of charge.
· Tax relief: You or your parents may get tax relief on certain health expenses, which you have incurred and for which you have not been reimbursed. The tax relief is at the standard rate of tax of 20%. So, if you spent €1,000 you would get a refund of €200. This claim should be made on a Med 1 form, available from your local tax office or online at www.revenue.ie. 

Claiming benefits can be complicated and time-consuming, so it’s worth getting expert help and advice from:
· your local Youth Information Centre. www.youthinformation.ie
· a social worker from your local Health Office.
· a housing welfare officer from your local authority
· your citizens information service: LoCall 1890 777 121
· your local social welfare office
· the Leaflet Request Line in the Department of Social & Family Affairs: Lo-call 1890 202 325
· online at www.hse.ie.

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Learning and Training

FÁS offers many schemes, job and training opportunities to help you find and retain work. Through FÁS you can access a wide range of supports for people with disabilities in employment; including adaptations grants, disability awareness training for your employer and grants to help you stay at work when you have become disabled while in employment. You can access FÁS services by visiting your local FÁS office, by calling the freephone telephone service on 1800 611 116 or by connecting to the FÁS web site www.fas.ie.

Various other education and training schemes exist, AHEAD (Association for Higher Education Access and Disability) www.ahead.ie, have published a relevant booklet ‘Accessing Third-level Education in Ireland – A Guide for Students with Disabilities’.
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Driving and getting about People with JIA often find getting out and about difficult. Many rely on cars – either driving themselves or getting lifts – or public transport to get around. 
There are various means tested supports available through the HSE that you may apply for as either driver or passenger, including grants for adapting a vehicle, the Disabled Person’s Parking Card and tax relief for necessary adaptations to vehicles. The Irish Wheelchair Association’s National Mobility Centre (tel: 045 893 094 www.iwa.ie ) and the Disabled Drivers Association of Ireland (tel: 094 936 4054 www.ddai.ie ) provide advice and information on all aspects of motoring.

If relying on public transport you can apply for the Free Travel Pass, which allows you to travel for free on all public transports and selected private services. Application forms are available from the Free Travel Section in the Department of Social and Family Affairs - LoCall 1890 500 000.

Finally...
Seek help. If you don't know the answers to questions about any of the above areas find your local Citizens Information Service by calling 1890 777 121.
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SOME REAL LIFE STORIES Here are some real-life stories from young people who happen also to have arthritis. The words are written by the people themselves but we have changed their names. They make the point that despite having arthritis, many young people are happy and lead rewarding lives. We hope you find them encouraging.

Niamh (aged 14)
My arthritis started when I was 8 and it affected my knees. I remember them being really swollen and feeling very heavy but they didn't hurt much. I didn’t feel like I was ill but I knew my mum and dad were really worried about me. I went to the hospital and saw the doctor who told me and my mum that I had arthritis. I didn't know what it meant but I knew it must be bad because I heard mum crying later on when we got home. I had to take some medicine every day and then go into hospital a few weeks later to have an anaesthetic and have my knees drained and some steroid medicine put inside them when I was asleep. It didn't hurt a bit and I didn't have to stay in hospital. After that I had loads of exercises to do which were a bit boring to do at home but my physiotherapist was fun and we had a laugh. She explained why I had to wear splints on my knees at night.
I don't think my friends really believed me when I told them I had arthritis and that upset me a lot at the time. But after I had my knees injected my knees have never been swollen again and I was able to be normal again at school and start doing swimming and PE. When I went to High school, I remember that my knees were fine, I had no medicines to take and no exercises to do. I was really pleased that I got picked for the school swimming team. I have to go to the hospital about once a year to see the doctor and also have my eyes checked. When I leave school I don't know what I want to do yet, but I want to work with children. Maybe I'll be a nurse.

Susan (aged 37)
I have been happily married for 15 years. I have two children.
My arthritis is the systemic type and I don't really remember the time before it all began. I do remember that between ages 10 and 13 it was not a problem and then at 13 I had a nasty flare-up. At that time children were often in hospital for weeks or months. I was in hospital for 7 months. This was like being at boarding school and although we were naughty we knew we couldn't be expelled! I cried when it was time to leave and go home!
Whilst I was in hospital my family had moved house and then I had to change schools. I was 14 and this was probably my most difficult time growing up and having arthritis. I took a long time to settle in school and I was bullied and had to try and ignore unkind remarks. I made a few very good friends, but left at 16 with no regrets.
The experiences I had growing up have really helped me to have a positive outlook on life. I feel I am easy going – I had to mature early and now don't get stressed by little things. Overall I think that all my experiences have given me much more appreciation of other people's problems.

Louise (aged 21)
I was diagnosed as having JIA when I was 6. Between the ages of 6 and 12 my arthritis was a painful nuisance. For example, by the end of games lessons, my ankles and knees hurt or when teachers were picking girls to do the can-can in the class they didn't pick me. Certainly arthritis marked me out as different, something which I resented strongly, because to me arthritis was an irritation and not a central part of my life.
It was from 15 years of age that I remember the arthritis starting to take over. Gradually my mobility got worse. My hips and knees needed replacing. I look back on those years and feel sadness because it was a tough and painful time. I was actually given the choice between extensive surgery or an electric wheelchair. Thankfully with the support of my family, I chose the first option.
Thankfully for me, my parents were happy to support me while I went back to college. I then continued on to University where I did a degree in communications. I firmly believe that it doesn't matter that I qualified later than my peers. It certainly hasn't affected my career prospects. I've been working now in Public Relations for 2 years and have recently moved into my own flat. Independence has been something I've had to work for and as a result means a great deal to me. Arthritis can be a painful nuisance - but it is not the sum of Louise C.

Sandra (aged 44)
I've had JIA for nearly 40 years. I was diagnosed when I was 4 years old. I had to go to hospital clinic a lot but was able to g