Transitioning from Paediatric Rheumatology to Adult Services

Fizz Transition Pack

Contents Introduction 3 Your health

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Your life

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Your education

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Fizz friends & future

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Your directory

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Introduction When you were younger, things were so much easier… or did it just seem that way? We know that being a teenager can be challenging. Being a teenager with arthritis is even more so.

Transition is the term used to describe the move from paediatric (child) health services to adult health services. During this time you will attend a transition clinic and will be treated by a “transition team” who are there to treat, inform and support you on your journey.

We have developed this Fizz Transition Pack to help guide you through the complex range of physical, psychological, social and emotional issues that you face as a teenager living with arthritis.

It’s full of useful information and tips to help you with your health, your life, your education and your future. It will show you where to go to get more information and support as you move towards adulthood.

Having the correct information, and knowing what supports are available should make your transition from childhood to adulthood a little easier.

.. k c u l d goo e! d i r e h t & enjoy

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Contents Your transition clinic 6 Who does what?

8 Your opinion is important 9 Juvenile idiopathic arthritis (JIA) 10 What are the different types of JIA? 10 Tests your doctor might have to do 13 Medicines 15 Tips for taking your medicines 16 What a pain 17 Use joints well and save your energy 18 Distract yourself 19 Commit to being fit 19 Eat well 20 Cigarettes, alcohol and drugs 21 Where’s your head at?

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The Arthritis Ireland website has a wide range of helpful information booklets, visit us on www.arthritisireland.ie

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Welcome to our adolescent and young adult transition clinic. Transition simply means changeover. For some of you having attended paediatric (child) services for years, moving into the adult “system” can be challenging.

Some of you are very familiar with the idea of transition having attended our “Teen Clinic” at Our Lady’s Children’s Hospital in Crumlin, but for many of you it is your first experience of this type of care. This dedicated transition clinic will allow you to become independent, helping and supporting you to fully understand your condition, your health needs and your treatment.

How does it work?

What is self-advocacy?

Rather than moving straight from a paediatric clinic to an adult clinic, you will attend the transition clinic for a number of years where you are looked after by both paediatric and adult doctors and their teams.

So, by the time you move into the regular adult service, the clinic and all its staff will be very familiar to you.

Self-advocacy is about learning how to speak up for yourself, making informed decisions about your treatment, finding out who will support you in your journey, knowing your rights and responsibilities, problem solving and communicating with your health professionals, family, friends and teachers.

You will become confident in making your own decisions, in asking questions and deciding what is best for you.

The model of care we follow in the clinic is one that supports the development of your independence and self-advocacy skills.

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Your transition clinic

Meet the team

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Our team is made up of doctors, a specialist nurse, a social worker, an occupational therapist, a physiotherapist, support workers and administration staff. We will work together with you and your parent(s) or guardian(s), and aim to provide a comprehensive service that not only considers your disease but also the impact this may have on your life.

is m a e t r Ou ... f o p u e mad Doctors

Specialist nurse

Social worker

Occupational therap ist

Physiotherapist

Support workers

Administration st aff

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We are a multidisciplinary team (a team made up of health professionals from different specialities).

Who does what?

The musculoskeletal system is made up of bones, muscles, tendons, ligaments, joints, cartilage, and other connective tissue. Rheumatologists medically treat diseases and disorders that affect the musculoskeletal system, including many autoimmune diseases like juvenile idiopathic arthritis.

Specialist nurse Your specialist nurse(s) will help to coordinate your care, understand your condition and how best to manage it. The specialist nurse can also meet you outside of clinic hours for education, support and advice.

Physiotherapist Your physio can help you find ways to decrease your pain and to increase your range of motion and strength. They can help you devise an exercise plan that suits your needs.

Social worker Access to a social worker can be arranged for you. They can advise you on your health care entitlements and explain medical cards, disability allowance or help you address any social or emotional difficulties you may experience.

Occupational therapist (OT) Your OT will help you to find better ways to do day to day activities, helping you to avoid injury and to save your energy.

They can arrange additional supports, aids and devices to help you manage better at home, school and work.

Support workers You may meet additional healthcare staff who support the nursing, physiotherapy and occupational therapy staff in carrying out your treatment.

Administration staff These are the people you meet when you check into the clinic and who you will make your next appointment with before you leave.

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Doctors Adult Rheumatologist / Paediatric Rheumatologist(s) are specialists who treat conditions involving the musculoskeletal system.

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What will happen?

When you come to clinic we usually see you alone with the team and if you have a parent(s) or guardian(s) with you they are very welcome to join us before the end of your appointment.

Everything you discuss with us is confidential. You can ask us as many questions as you like related to your illness, medications or how your illness impacts your social and personal life.

They can advise you on the best treatment for you, help you to manage your arthritis, give you biologic medication through infusion (i.e. delivering the medication directly into your bloodstream), and provide you with intensive rehabilitation.

If you experience a flare up you could be admitted to Our Lady’s Hospice and Care Services, Harold’s Cross for expert rehabilitative care from the multidisciplinary team to help you make a speedy recovery.

Who to contact outside clinic times?

Outside clinic times you can contact the specialist nurse or the administration staff who will pass on your message.

The National Centre for Paedriatric Rheumatology at Our Lady’s Children’s Hospital in Crumlin, at St. Vincent’s University Hospital and at the Rheumatic & Musculoskeletal Disease Unit at Our Lady’s Hospice and Care Services, are all linked and work together to provide you with the best care and support.

Your opinion is important!

Remember you are the most important member of the team.

We want you to be involved in making decisions about your care and future management. We value your thoughts so if you have any comments or ideas about how to make this clinic a better experience for you, please let us know!

The rheumatology team at Our Lady’s Hospice and Care Services, Harold’s Cross in Dublin,

Best wishes From the Transition Team 9

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which is usually supported by the same multidisciplinary team you see at the clinic, provides specialist care for people with arthritis.

What are the different types of JIA?

JIA is the short name for juvenile idiopathic arthritis.

There are several different types of JIA and these are described below.

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.

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, the time of onset and the pattern of joints involved and whether there are other problems such as a fever or rash.

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Juvenile idiopathic arthritis (JIA)

What are the different types of JIA?

This is the most common form and is the name given when only a few joints are involved in the first six months of onset. Oligoarticular-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 leaves little or no damage to the joints.

On average one in three children with oligo-articularonset arthritis have a chance of developing uveitis (inflammation of the eye), especially if there is a positive test for an antibody in the blood, called anti nuclear antibody ANA, so regular eye checks with an ophthalmologist (eye specialist) are necessary.

Polyarticular-onset JIA This is the next most common type. Polyarticular JIA (or polyarthritis) means that many joints are inflamed. Polyarthritis can begin at any age but often begins during the toddler years and again in the teenage group.

It is more common in girls and can be similar to the adult-type rheumatoid arthritis.

Five percent 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.

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Oligo-articular-onset JIA (sometimes called pauci-articular-onset JIA)

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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.

It behaves very like the polyarticular onset JIA detailed on the previous page.

Psoriatic arthritis Psoriasis is a scaly skin rash which can appear with childhood arthritis. The joints may be affected before the skin rash appears – it may only affect the fingers and toes but other joints like knees and elbows can also be affected.

Systemic-onset JIA This is the rarest type of JIA. It can affect children and young people at any age, with boys affected as often 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. Internal organs may also be affected.

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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Extended oligo-articular JIA (sometimes called extended pauci-articular JIA)

(See Arthritis Ireland’s JIA Explained for more information)

Inflammation - (ESR & CRP).

Liver function - (LFT’s) monitor for medication side effects.

Blood tests can help with diagnosis by testing for levels of auto-antibodies like rheumatoid factor (RF) which is present in most adults with rheumatoid arthritis but only 5% of children with polyarthritis or antinuclear antibody (ANA) which can increase your risk of uveitis (inflammation of the eye).

Blood tests can also help map disease activity and progression by measuring:

Kidney function - (U & E) measures how well the kidneys are working.

Haemoglobin levels for anaemia. A lack of the red blood pigment haemoglobin in the blood means you have anaemia which is a lack of the mineral iron in your blood. Anaemia can lead to fatigue (tiredness), breathlessness, pale pasty skin tone and feeling generally unwell. Most times the anaemia recovers once the inflammation is controlled by medication.

Sometimes it needs to be treated by taking iron supplements and making sure that your balanced healthy eating plan is rich in iron.

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Ask your doctor or nurse to explain what type of anaemia you have so you will know the best way to treat it.

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Tests your doctor might have to do

are usually needed to allow the doctor to look for or assess any joint damage that you may have. Sometimes it is important to remove the fluid from an inflamed joint and inject it with a steroid compound to reduce swelling. This is called aspiration of a joint.

SLIT lamp examinations are special eye tests done by an eye doctor (ophthalmologist ) to look for inflammation of the eye (uveitis) that can be found in 10% to 30% of people with JIA. A DXA scan is used to measure the density of bones. It helps to diagnose osteoporosis.

Ultrasound scans (similar to scans of babies in pregnant mums) and magnetic resonance imaging (MRI) are other ways to look at your joints.

A heart ‘echo’ (ultrasound scan of the heart) to look for inflammation of the covering of the heart (pericarditis) may be necessary if you have systemiconset JIA.

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X-rays of the affected joints

Medicines

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Make sure you understand fully how and when medication needs to be taken, if you are taking responsibility for that yourself.

It is very important to take your medication as it is prescribed to make sure it works properly for you.

There are various drug treatments available for JIA - some which treat the symptoms and others which treat the disease itself. Drugs that treat symptoms such as pain, swelling and stiffness include painkillers and non-steroidal anti-inflammatory drugs (NSAIDs).

Drugs that treat the disease itself include disease modifying antiTNFs (DMARDs) and corticosteroids (steroids).

If you forget to take your medicine make sure you let your doctor or specialist nurse know and NEVER decide to stop taking your medication on your own without discussing your concerns about the medication with your doctor as it could negatively affect your treatment.

There are certain risks involved with taking some of these medicines, your doctor will explain these risks to you and make sure that you know what to be aware of.

If you do wish to stop your medication please do this with the knowledge and support of your doctor or nurse so you can monitor how you respond together just in case your arthritis might flare again and you may need to be seen early at the clinic.

Drugs like corticosteroids for instance can make a bout of chickenpox more severe or drinking alcohol while using methotrexate can make your liver more vulnerable to damage. It is also very important not to father a child or become pregnant while on methotrexate as it can cause damage to the unborn child. You can learn more about this further on.

Some medications can have side effects. You should know what kind of side effects your medication can cause and if you are experiencing any side effects you should talk about them with your doctor.

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Your doctor and specialist nurse will explain everything about your medication to you; what are the different types of medication used to treat JIA and which is right for you.

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Keep track with a calendar on your bedroom wall Put a reminder in your phone Stick a reminder no te on your mirror Take them around a daily activity like having breakfast Leave a glass of wa ter on your bedside loc ker Have a pill box to take with you when you are out and about – do n’t forget to keep it filled up!

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taking s! r o f s p i T icine d e m r u yo

What a pain!

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You can find out more about healthy eating and exercise later but here you can learn about some ways that will help you manage your pain at home, at school or wherever you are when pain strikes. Complete pain relief may not be possible all the time but you can do things to lessen the pain to levels that you can manage.

Applying cold or heat packs can help ease inflamed joints or relieve aching muscles. The goal of pain management is to find ways to deal with or lessen your pain while at school, at work, being with friends, doing physical activity or getting to sleep.

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There are other ways to help you deal with your pain besides taking medication. Having a healthy diet and getting proper exercise will leave your body less exposed to pain and better able to handle it.

Using your joints well involves doing everyday tasks in ways that reduce the stress on them. Saving energy involves listening to your body for signals that it needs to rest, and pacing yourself to avoid exhaustion. Here are seven basic guidelines for using your joints well and saving energy:

1. Respect pain. If you have a lot

4. Use your largest and strongest joints and muscles for daily tasks wherever possible. For example, use a bag with two shoulder straps rather than carrying a heavy load on one shoulder. Spread the weight of an object over many joints to reduce the stress placed on any one joint.

of pain that lasts for two hours or more after you finish a task you may need to do a little less next time, or go about it in a way that takes less effort.

2. Become aware of your body

positions. Avoid being in one position for a long time and avoid postures that make you stiffer.

Avoid activities that put too much pressure on your joints. When necessary use supports or splints that reduce stress on joints and make difficult tasks easier.

5. Try to balance rest with

activity. Take breaks when you need them, but be aware that too much rest can cause your muscles to stiffen.

3. Control your weight as well as

6. Simplify your day. Plan ahead,

you can. If you weigh more than is healthy, this puts extra stress on weight-bearing joints and can, in some cases, lead to further joint pain and damage.

organise and create short cuts.

At school or work, make good use of breaks to change your position, to move around and to relax.

7. Don’t be afraid to ask for help.

Take responsibility for yourself and ask for help when you need it.

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Use joints well and save your energy

Commit to being fit

If you are doing something you enjoy or something to occupy your mind it can distract you from feeling or being aware of your pain.

Regular exercise is one of the best ways you can help treat your JIA; it can help strengthen your body, increase your energy, keep your range of motion and joint mobility, manage your pain, keep your weight under control, help you sleep better and help you cope with negative emotions or feeling down.

Listening to music, reading a book or watching a film can allow you to focus on something besides your pain. Deep breathing and meditation will help you relax and make you feel more in control of your pain.

Try not to focus too much on pain or potential pain; something may not hurt as much as you expect it to. Keep a pain diary so that you can work out when and why you experience more pain and what methods help you to deal with it.

Your physiotherapist can help you decide what type of exercise is best for you, what exercises you need to do and which are safe for you to do. It is also important to do exercise that you enjoy, otherwise it may be hard to motivate yourself to do it.

You could try swimming, cycling, group sports, yoga, tai chi, Wii fit or even dance classes, just remember to talk about your exercise plan with your physiotherapist.

run different Our brancheisse courses exerc e year. throughout th d ebsite to finin Go to our wh g ppenin out what’s caal area. your lo 19

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Distract yourself

Eat well

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Eating a healthy diet is about getting a variety of food from different food groups. In general, a healthy diet is one that is:

It provides us with energy and also helps us to absorb certain vitamins.

There are five main food groups.

The food pyramid (below) shows the proportion of your diet they should make up. You don’t need to have this balance at every meal, but you should aim for this over the day or the week.

High in fruit and vegetables High in starch and fibre Low in fatty foods and salt Low in added sugars A balanced diet contains carbohydrates, protein, fat, vitamins and minerals, and fibre.

Carbohydrates provide us with energy. Protein is essential for growth and repair of the body.

Foods that are like each other sit together on the same shelf and can be swapped. So if you don’t eat meat or fish you need to eat plenty of beans, chick peas and lentils instead. Plenty of variety is the key to getting the balance right!

Vitamins and minerals play a major part in the healthy functioning of our bodies. Although it is healthy not to consume too much fat, our bodies do need some.

HSE.ie Healthy eating and nutrition

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If you want to look and feel your best then you have to eat well! Eating a healthy, balanced diet can build up your bones, keep your energy levels up, keep your skin, teeth, hair and nails healthy and boost your immune system.

When you’re a teenager you may well come across cigarettes, alcohol and drugs for the first time. Be careful as they can be very harmful to your health and wellbeing.

Not only is it illegal to smoke under 16, to drink under 18 and to take illegal drugs at any age, it is also extremely damaging to your health, and may make your arthritis much worse. Don’t be afraid to say no, and stand up for yourself and your health! However, if you are using any of these substances it is extremely important that you tell your transition team in confidence. They need to know so they can best treat your JIA.

Smoking Smoking can cause loads of major health problems including cancer, heart disease and infertility. Two recent studies from Sweden have also found that smoking is a major risk factor for rheumatoid arthritis and may prevent TNF inhibitors, which are used to treat the disease, from working effectively.

If you do smoke the sooner you give up the easier it will be.

There is lots of help out there to quit.

For more information on the thousands of chemicals found in cigarettes, the effects of smoking and help on quitting, visit www.quit.ie

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Cigarettes, alcohol and drugs

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 to their liver. A sensible compromise is a maximum of 4 units per 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. Don’t binge drink, it is not wise to drink all 4 units at one time within the week, pace yourself. Remember less alcohol is more money, energy and control.

useful contacts www.quit.ie www.healthpromotion.ie/alcohol www.healthyireland.ie/health-initiatives/alcohol

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We have a big drinking culture in Ireland but this doesn’t stop it from being really bad for our health. Alcohol can damage your brain, heart, stomach, reproductive organs and nerves, and lead us to partake in inappropriate or risky behaviour.

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Illegal drugs In fact, many of these drugs are so new that we don’t know yet what effect they will have on people in the long term.

Like alcohol, using illegal drugs can lead us to partake in inappropriate or risky behaviour, which inevitably cause us harm.

For more information on using cigarettes, alcohol and drugs check out spunout.ie or drugs.ie

You c a your n harm misu self b y sing drug s.

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Drugs are addictive and can kill you. The drugs prescribed by your doctor are used to treat your disease, they have been fully tested and are taken in the correct doses. But illegal drugs (or the ‘legal highs’ that could be found in ‘head shops’) are not regulated. They can contain all manner of dangerous substances from rat poison in ecstasy to ground glass in marijuana.

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You can experience a lot of emotional upheaval during adolescence and having JIA can add to this. Having a condition like JIA can cause difficult emotions and depression.

It is difficult when your body doesn’t do what you want it to be able to do. If you are experiencing these feelings then talk to someone you trust about them; your transition team, a family member or friend can help you work through difficult times or direct you to places where you can get help and support.

There are lots of links in our contacts section to organisations which can help you through difficult times. Don’t be afraid to use them, you never need to go it alone! See www.yourmentalhealth.ie

useful contacts www.alustforlife.com www.jigsaw.com www.shine.ie

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Where’s your head at?

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Contents Happy being you Relationships Sexuality Bullying Your entitlements On the move Is there more?

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Happy being you

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You begin to express yourself through the way you look and through the things that you become involved with or are attracted to. You should be confident in your own likes and dislikes, you are an individual and it doesn’t matter if you are different to your peers. If you ever feel isolated or alone you can speak to your transition team or contact one of the relevant support organisations from the useful contacts section. There is always someone out there who can help.

You only have to ask!

Remember that the images you see of celebrities in magazines and on TV are not realistic. We’d all be as perfect as they appear if we had a team of stylists and personal trainers around us every day. You might feel that people judge you on how you look but you need to learn to be happy with who you are and what you have.

Don’t judge other people on looks or for other superficial reasons and don’t bother with people who judge you that way.

It may seem like a cliché but it really is what’s on the inside that matters.

Life can’t all be fun and games but a positive optimistic outlook can make things easier.

Sometimes laughter is the best medicine and with a smile on your face you will find it easier to make friends and get along with the people around you.

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As you enter your teenage years your personality, self image, self confidence and self esteem begin to fully establish themselves. You start to like and be interested in different things, different types of music, different hobbies and even different ‘looks’.

Relationships:

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These relationships can help you to feel loved, supported and empowered but you need to work on them to maintain a positive impact. Remember that communication is the key to successful relationships – whatever the relationship.

Family You experience the first close relationships you ever have with your own family. The way you interact with your family is an indication of how you will behave in other relationships. It’s important that you communicate well with your family so that they know what is going on with you and you with them.

All young people can have strained relationships from time to time with family but if you have JIA in the family this can add another dimension to the family dynamic.

Your fa m be a girly can suppo eat r let the t to you, you whm help en need i you t.

Your family can be a great support to you. Let them help you when you need it but make sure that you do what you can yourself.

Be respectful of the needs of the other members of your family. For example, if you argue, do it fairly. Be rational and allow others to express their opinions too.

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Relationships are very important in anyone’s life; your family, your friends, your boyfriend or girlfriend, your peers, your teachers and your health care professionals can all impact on your quality of life.

Parents

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Sometimes your natural need for privacy might confuse or concern your parents; they wonder why your door is locked or why you no longer share information about your day to day life with them.

This is true for all young people; you might feel that your parents don’t understand you, are too strict or not supportive enough.

You need to realise that this is also a difficult time for your parents and that they need time to adjust to the fact that you are growing up, becoming an adult and starting to take charge of your own life.

Your parents may also have concerns for your health; are you taking your medication correctly, are you smoking or using alcohol or drugs?

You need to reassure your parents that you are being responsible about your health if you want them to leave the decision-making to you.

If you earn each other’s trust and communicate with each other it’s easier all round.

You ne ed other’sto earn each comm trust and uni each ocate with ther.

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For most of your life your parents have been making decisions for you. As you get older and begin to make decisions for yourself your relationship with your parents can become strained.

Siblings

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You seem to get more attention, maybe you take up more of your parent’s time or you get out of doing some chores. This may be frustrating for your siblings and they may not always know or remember how difficult it is to live with JIA. Consider being open with your siblings, communicate your feelings and share your experiences so that you understand each other. Don’t use your condition as an excuse to win an argument, it’s not fair and it will make them more resentful.

When one child in the family has a condition like JIA, siblings may feel like the world revolves around the child with the condition.

Don’t pretend to be in pain or unable to do something because you don’t want to because they will be less likely to believe you when you are having difficulties.

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Your siblings can sometimes be your best friends and then again your worst enemies, this is true of all families. Siblings naturally feel an element of competition with each other, even those that get on well most of the time. You can argue about having to share your stuff, using or breaking each other’s things or feeling that you are treated differently by your parents.

Friends

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However it can sometimes be hard to find and make good friends. To find good friends you need to be your own person, to question what you believe and not always agree with what “everybody else” thinks or does.

Good friends will like you for who you are. Be yourself! The friends you’ll make and keep for the rest of your life will be the ones who like you because you are uniquely you!

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Good friends can be a great support, you can share your life with them, they know your interests, secrets, hopes and dreams.

Boyfriends/Girlfriends

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A healthy relationship where you trust your partner and can communicate all your concerns and thoughts, can have a very positive impact on life and well being.

You should never be pressurised into doing something that you are uncomfortable with, and a person who loves and respects you will understand this. Remember, you should be treated with dignity and respect.

Ending a relationship can be frightening, you may be worried that you’ll miss that person or that you will be lonely. However, your happiness and safety are so important. Life is too short to be in an unhealthy relationship.

Remember to respect yourself and value your self-worth.

useful contacts www.sexualwellbeing.ie www.myoptions.ie www.b4udecide.ie

*Early Sex-The Evidence – read the full report at www.b4udecide.ie 32

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A healthy relationship is when two people develop a connection based on mutual respect, trust and honesty. An unhealthy relationship generally displays mean, disrespectful, controlling and abusive behaviours. If you find yourself in a relationship where you feel unhappy, rejected, isolated or abused either emotionally, physically or sexually, you should seek support and seriously consider ending that relationship.

Sexuality

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You may be concerned about looking different from your friends, if you are attractive enough and worry about forming relationships.

You can talk to your transition team about concerns like these in confidence. It is important that you feel comfortable with your sexuality.

You may worry about whether joint pain or affected joints will cause problems physically with having sex.

Your se xual rel ationsh should ips always m you fee ake lr

especte d fe.

and sa

useful contacts www.reachout.com www.b4udecide.ie

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As you grow up, you become aware of your own sexuality and your own sexual identity. Sometimes this causes worries for you and may be difficult to talk about.

Bullying

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Bullying can be direct, when a person or group says or does hurtful things to you, or it can be indirect, where you are deliberately ‘left out’ of activities. Make sure that you are not behaving in a way that another person might experience as being bullied; purposefully excluding people can be very hurtful and damaging to their self-esteem. Often bullies will act out of jealously, ignorance or because they have been bullied themselves in the past.

There are resources out there to help you deal with bullying; the most important thing to do is to tell someone you trust.

This might be a family member, your transition team, or you can contact one of the organisations mentioned in the contacts section.

Reachout.com has a lot of information to help you deal with being bullied or you could call Childline (1800 666 666) if you want to speak to someone who doesn’t know you in absolute confidence.

Joining a youth group or starting a new class outside of where you are being bullied can help rebuild your confidence and prepare you for dealing with the situation.

www.reachout.com Childline: tel: 1800 666 666

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Bullying can be a problem for people of any age but often affects teenagers more than other groups. If you are being bullied at school, work or elsewhere, there are people you can tell who will understand your situation, treat what you tell them confidentially and be able to help you overcome the problem.

Your entitlements

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While you can ask your transition team about your entitlements and benefits, they may not be able to give you the exact information.

For a full breakdown of all your entitlements check out the Citizens Information Board website:

www.citizensinformation.ie

f all wn o e o d k rea s se full b itlement tion a r o F ent rma your izen Info ide to t i Gu the C booklet people r d Boar ments fo ities e l l i t enti ith disab w

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In this country everyone is treated on an individual basis. What you are entitled to depends on you and your family’s circumstances.

Health Service

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A medical card allows you to receive certain health services free of charge. If you do not have a medical card you may be eligible for a GP card which will cover the expense of your GP visits.

If they have a medical card then you are also included as a dependent on that card. Your family will be given a medical card following a ‘means test’. This test determines how much income your family gets and if it is below a certain fixed level, you are entitled to a range of benefits.

With the Drugs Payment Scheme your family will pay no more than â‚Ź124 each calendar month (from 1st April 2019) for approved prescribed medicines and certain appliances.

For a full breakdown of all your health service entitlements see

www.citizensinformation.ie

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You are considered a dependant of your parent(s) or guardian(s) until you are 16 or finished with formal education; and are entitled to the same health services as they are.

Benefits

your

As most benefits are means tested any changes in your financial circumstances or, for example, if you enter further/higher education, may result in a change to your benefits.

Illness benefit is a short term payment you can apply for if you have at least 104 weeks of paid PRSI contributions, other restrictions and limitations do apply.

You will find lots of information on www.welfare.ie or the Citizens Information booklet Guide to entitlements for people with disabilities.

Invalidity Pension is a long term payment that you can apply for if you are considered permanently unable to work, have been unable to work for at least 12 months and are unlikely to be fit to work for another year.

Again, these are means tested and you have to meet certain requirements. You can apply for different benefits as your situation changes.

www.welfare.ie

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Gaining some benefits makes you eligible to receive others.

Disability Allowance is a means tested payment for people who are unable to work because of their disability. Getting this payment means that you are very limited in doing any work that would be otherwise suitable for you, however you may be eligible to earn a certain amount per week, doing work which is considered rehabilitative without your benefit being cut down. You are eligible for this allowance from 16 years of age.

When you are under 16 there are many benefits that your parent(s) or guardian(s) can claim on your behalf. When you are over 16 you can claim certain benefits for yourself.

On the move

your

To get the pass you need to meet certain conditions or be receiving an Invalidity Pension. There is no set limit on how much travel you do and you may be entitled to a free travel companion pass, if you are assessed as unfit to travel alone, which allows you to bring along a companion over 16.

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Your free travel pass allows you to travel for free on all public transport and some private services.

Getting into the driving seat

be a certain age to drive some vehicles, have passed a theory test, have a learner’s permit, have completed an eye sight report etc.

You can get all the information you need to know about getting a licence to drive from the Road Safety Authority website

www.rsa.ie Here you can download the Rules of the Road booklet which you need to become very familiar with, not just to pass your test but to keep you safe on the road.

Being able to drive can give you freedom and independence but you must do it responsibly, your safety and the safety of other road users depend on it.

Every day road users are injured or killed due to reckless driving, driving while under the influence of alcohol or drugs and speeding.

Make sure that you never add to the road accident figures and remember being a good driver doesn’t mean being a fast driver.

It means that you understand the dangers on the road, are respectful of other people on the road as well as being able to control your vehicle.

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In order to learn how to drive certain restrictions and conditions apply, you have to:

your

Is there more?

your

If you have any personal issues that you need to talk about or you need more information on anything discussed here check out the useful contacts section, talk to your transition team, email Arthritis Ireland at

helpline@arthritisireland.ie or call the Arthritis Ireland Helpline on

1890 252 846 or 01 661 8188.

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We know that life can be complicated and you may have things on your mind that we haven’t mentioned here.

your

www.crisispregnancy.ie www.reachout.com www.rsa.ie www.jigsaw.ie helpline@arthritisireland.ie

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useful contacts

your

education

42

Contents Life lessons Rise and shine Making choices Letting people know Reasonable accommodation Turn to the team Dealing with absence Exam stress Supports for continuing your education Become a volunteer See the world Food for thought

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44 44 45 46 47 48 49 50 51 52 53 55

Rise and shine

Your education is ongoing whether you are at school, in further education or training or even travelling the world, you are continuing to learn new skills and have new experiences.

Sometimes mornings are difficult, you might feel like you didn’t get enough rest or you are feeling sore and unmotivated.

Furthering your knowledge, while interesting, can often be stressful: coping with school work, exams, leaving home for college or university, starting work or backpacking along the Inca trail, and dealing with your arthritis can add to the challenge. It may not always be easy but you can do almost whatever you set your mind to once you have planned it out, paced yourself, know where to get help and are ready to give it your best shot.

Using an electric blanket before you get out of bed can make it easier to get up and go. A hot shower will also help to soothe painful muscles, warm up joints and wake up your brain before you start your morning’s activities.

Leave yourself enough time to get ready and to reach your destination so that you are not stressing out about being late.

By following the ‘use joints well and save your energy’ tips from Your Health section you can reduce much of the stress on your body that your day to day activities can bring.

useful contacts www.alustforlife.ie www.shine.ie www.jigsaw.ie

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education

Life lessons

Making choices

your

What subjects do you enjoy and want to continue with? Will you go on to third level education, take on an apprenticeship or get a job?

The Career Guidance Counsellor in your school will help you work out some of these questions and let you know what subjects or marks you will need to follow the direction that you are interested in.

The National Learners Database www.qualifax.ie has a wealth of information that will help you decide where your interests lie and what type of career you would like to pursue.

education

During your teenage years you will have a lot of choices to make, choices that will determine what direction your future might take.

Or you could check out www.findacourse.ie to see what options are out there. For a fun way of learning a little about what will make you happy and fulfilled in your life choices you can do one of the questionnaires at

www.authentichappiness.sas.upenn.edu

useful contacts www.findacourse.ie www.solas.ie www.courses.ie

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Letting people know

your

Maybe your condition is having little negative effect on your ability to study, train or work and you feel that it is not necessary that peers, teachers or an employer knows.

Having told a teacher or employer in advance may make it easier for you to get help when you need it. You may also benefit from disclosing as you may be entitled to certain supports that will make studying, working and training easier for you.

Although your condition may not affect your ability to get stuff done at present, it may become active at a later time which means you will need to ask for help.

useful contacts www.citizensinformation.ie www.threshold.ie www.rtb.ie

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education

It is your decision whether you want to tell people at school, at work or elsewhere that you have JIA.

By law your place of study or work must make what is called ‘reasonable accommodation’ to allow you to manage getting things done without making your health suffer.

This means that your schedule and/ or environment can be adapted to your needs; for example using a laptop at school, getting extra time for exams, using recording equipment for lectures and training or getting an employer to provide specific equipment that will allow you to work without risk of injury. There are grants available that your school, education provider or employer can apply for on your behalf.

Get more information at

www.citizensinformation.ie

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education

Reasonable accommodation

Part of providing reasonable accommodation could be that your education provider will take into account any mobility issues you have and give you extra time to move between rooms, provide a locker so that you can avoid carrying heavy text books around or your employer can ensure that you work on a ground floor level or do not have to do tasks that mean heavy lifting or repetitive movements.

Take note of the tasks that cause problems for you, perhaps standing for long periods of time, taking down notes or typing is causing you trouble.

You can let your Physio and OT know what type of stressors your day involves, how your body feels after the day’s activities and what your schedule is like.

They can then help you with exercises and stretches that you can do during the day to keep aches and pain to a minimum or get you fitted for splints or provide/source other aids and appliances that will simplify tasks.

At your request, Arthritis Ireland can liaise with your education provider or employer to fully inform them about living with juvenile arthritis and provide them with information and support to adequately support you.

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Turn to the team

Periods out of school, college or work may be necessary from time to time because of your JIA. You may have appointments to attend or be feeling too unwell to get up and go in.

If you are missing out on study or training make sure that you are being given homework, course work notes and assignments.

Keep in touch with friends so that they can fill you in on what’s happening and what you are missing and ask teachers and trainers to get you up to speed on your return.

If you are working you should have an employment contract, which will contain information about taking sick leave. You may not automatically get paid for sick leave and usually will have to provide a medical certificate from your doctor if you are on sick leave for more than two days in a row.

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education

Dealing with absence

Exam stress

your

However you can make things a little easier on yourself too!

Remember that your education provider must reasonably accommodate you and your condition; you can get extra time to complete your work, use a laptop, a scribe or be given extra time. Some stress around exams is normal but to avoid putting too much pressure on yourself coming up to exams it helps to be prepared.

Set realistic goals for yourself and review what you have covered and what you need to cover regularly so that you don’t get any unpleasant surprises.

Make sure that you relax, de-stress and have some fun as often as necessary to keep the pressure at a manageable level.

Coming up to the time of exams ensure that you get enough sleep and avoid studying into the early hours right before an exam as tiredness will make it more difficult to think and to remember what you know.

You will need to have put the work in all year rather than just cramming a few weeks before the exams.

If there are any topics that you are having difficulties with don’t be afraid to ask for help; that is what your teachers, trainers and lecturers are there for.

If panic sets in BREATHE, whether it is in the middle of an exam or while trying to sleep the night before, deep breathing will help to calm your nerves and allow you to get on with it!

Have a study plan to help cover all the material in time.

Don’t forget that an unsuccessful exam is not the end of the world; you can try again, do better next time or take a different course, subject level etc.

Good luck!

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education

Having tests, assessments or exams can put a lot of pressure on any student, but it can be more pronounced if you have a condition like JIA to deal with.

If you are continuing with your education, be it training or further study, there are lots of supports that you can access be they practical or financial.

Further education and training is usually offered by colleges of further education, PLC (Post Leaving Cert) providers etc., and higher education and training is provided mainly in universities and Institutes of Technology (ITs).

The website www.studentfinance.ie and www.hea.ie gives you information on all financial support available to those continuing in education from maintenance grants to the Fund for Students with Disabilities.

AHEAD, the Association for Higher Education Access and Disability, promotes full access to and participation in further and higher education for students with disabilities and provides you with comprehensive information on www.ahead.ie.

Access Officers or Disability Officers are available to help you in ITs and universities. They can help you get the supports that you need including assistive technology. You will also need financial support while continuing your education.

useful contacts www.hea.ie www.susi.ie www.ahead.ie

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education

Supports for continuing your education

Becoming a volunteer is a great way to build your CV, get work experience and learn new skills. There are lots of ways to volunteer, wherever your interests lie there is something out there that you can get involved with.

Volunteering is a really great way to make new friends, learn new skills, improve your CV, test out a career path you are interested in, build your confidence and have fun.

Potential employers look very favourably on people who volunteer, it shows that you are enthusiastic for work,

can provide you with a great reference and can also show that your JIA won’t stop you from getting your job done.

Volunteering is extremely important to the work of Arthritis Ireland and we could use your help.

Arthritis Ireland are always looking for volunteers. Contact us on 01-6618188 or email us at info@arthritisireland.ie to find out what opportunities we have that would suit you.

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Become a volunteer

See the world

your

Planning is vital to make sure that your trip runs as smoothly as possible. First decide where you want to go and how you want to get there. You can find contact details for the relevant embassies on the Department of Foreign Affairs website, www.dfa.ie

You may need to get specific vaccinations before you travel to some countries. You will find all the information you need about these from the Tropical Medicines Bureau on www.tmb.ie

Remember to start early to allow time for the vaccination to work before you travel. Students can usually get vaccinations at a reduced rate. Please remember to tell the doctor giving the vaccination about all of your medications.

You may need special documentation from your doctor indicating what medication you are taking through customs.

Where possible, bring your medications with you on board flights. Luggage goes missing all the time and this could have a massive impact on your arthritis.

You can contact the companies that you are travelling with to find out how they cater for someone with a disability, if you have any concerns.

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education

Just because you have JIA doesn’t mean that you will miss out on backpacking around some remote region of the planet. You can take that year out and have a wild adventure just like anyone else.

Talk to your health insurance provider about getting travel insurance or you can contact various insurers to get quotes before you travel. You need to make sure that if you do become unwell while travelling that you will be covered for whatever treatment you need.

Try to pack only what you need, depending on where you are going. You can probably buy necessities when you arrive avoiding the struggle with heavy bags.

A wheelie bag might be the best option as you won’t have to carry all the weight yourself but can push or pull your stuff along.

www

.dfa.ie

.

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You can also talk to your doctor about your medication options while you are travelling or living abroad.

There are lots of other sites you can visit to get inspiration, advice and help for example: www.usit.ie www.assistireland.ie Has a section on travelling with a disability that gives you more tips and links to other useful sites. www.tmb.ie The Tropical Medical Bureau provides vaccination and health information for the international traveller.

u have to o y ll a w o N e where d i c e d s i o d to go! you want

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Food for thought on where to go and what to check out

your

www.authentichappiness.sas.upenn.edu

www.citizensinformation.ie www.ahead.ie

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useful contacts

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friends

& positive future

57

Contents

Arthritis Ireland 59 Networking and supports 60 School or work supports 61 How do I join in?

61 Positive future 62 Mentors’ Stories 65

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Arthritis Ireland

your

We provide real solutions to the real issues that you face every day as a young person living with arthritis, and we work with you and your family to help you manage how your arthritis affects your life.

We know that everyone is unique, we know that arthritis affects everyone in different ways and we know that every day can bring a lot of challenges. Through our peer support services, information booklets, helpline, awareness campaigns, online supports and the fun and informative events that we run, we will help you to live your best quality of life.

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Fizz Friends & Positive Future

We work hard so that people with arthritis can live a life that is full and fulfilling‌ not to mention fun!

We offer a range of information and supports to help you and your family understand all aspects of JIA. This includes our ‘JIA Explained’ booklet which has been created with the shared expertise and knowledge from parents, health care professionals and JIA-at-NRAS staff. It provides you and your family with the right amount of information and sign-posting to help you with your JIA.

Most of all, it is a real opportunity for young people living with arthritis all around the country to get in touch with each other and benefit from a strong support network, with many opportunities to socialise and have fun too. You can find them on Facebook, or contact them by email.

Parents and older teenagers can stay connected through our Arthritis Ireland Facebook page.

Arthritis Ireland Helpline

It’s a great way to be supported by your peers, whilst staying up to date and informed. You can also follow us on Twitter and Instagram.

Our National Helpline is staffed by volunteers who live with arthritis and it provides practical and emotional support to parents of children and young adults with arthritis. Anyone looking for information or support in relation to JIA can get in touch with our helpline.

1890 252 846 or 01 661 8188

When you are over 18 you can join our Young Arthritis Network.

This focuses on everyday issues that young people living with arthritis face, including pregnancy, relationships and employment.

1890 252 846 or 01 661 8188 helpline@arthritisireland.ie Young Arthritis Network Arthritis Ireland @Arthritisie @Arthritisie 60

your

Fizz Friends & Positive Future

Networking and supports

We can liaise with your school/workplace to fully inform teachers, fellow students, employers and colleagues about living with JIA by providing educational talks, information and support.

How do I join in?

If you or your family would like to attend any of our events or get involved in any of our campaigns just get in touch!

Remember if you are interested in sharing your story, writing a blog or attending one of our events, just let us know

communications@arthritisireland.ie

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Fizz Friends & Positive Future

School or work supports

Just because you have JIA there is no reason why you can’t have a very positive future.

You can do pretty much whatever you set your mind to if you work to achieve it and use the supports around you that you need.

Our JIA Mentors are all very unique but one thing that they all have in common is that they are living positively with their arthritis and their futures continue to look very bright! Further on you can read their stories and get a glimpse of what life is like in their shoes.

Contact: info@arthritisireland.ie

Who are JIA Mentors?

Who knows arthritis better than those who live with it?

JIA Mentors are adults who themselves have/had JIA, and can provide you and your family with valuable insight and support.

By becoming a JIA Mentor these adults can pass on the benefit of their experiences with arthritis, helping to increase you and your family’s confidence by helping you to better understand your condition and its impact on your lives.

An adult who has grown up with JIA has so much relevant information to share. With their insight and knowledge, JIA mentors can be a positive source of support to teenagers like you and your family, who are now experiencing what they have already been through.

Your JIA Mentor can be just a phone call or email away when you are looking for their personal perspective on coping with life’s challenges.

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Fizz Friends & Positive Future

Positive Future

Our JIA Mentors and their role

your

“ It is only now that I am a parent that I understand all the sacrifices that my parents made for me and how difficult it must have been to watch me struggle and in pain.

Being different is never easy, especially as a teenager limping, wearing wrist supports, having deformed limbs, etc. It is only over time that you realise that arthritis does not define you – it is part of you but not the most important part.

I would be delighted if I could help just one child/young adult understand that yes, there are challenges ahead but nothing that you can’t do if you put your mind to it.”

“ Having lived with JIA for most of my childhood, I feel I should make use of the knowledge and experience that I have gained to support others who live with the condition (together with their families).

I think I have a good understanding of the challenges and issues that can arise and hope that I will be able to help in giving support in any way possible as a JIA Mentor! ” Máirtín, 21. Galway

Colette, 39. Cork.

lp can he e l p o e p arMany ge your in. a n a m you ur pa and yo s i t i r th

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“ When I heard about the Arthritis Ireland JIA Mentoring programme it made me wish that all this help was available when I was young. Growing up with JIA was definitely a challenge but I had wonderful parental & sibling support.”

I would love to share my experiences with families affected

by JIA to show that you can lead a happy life when you have the right support behind you. There are a lot more effective medication regimes available now than when I was young.

I have spent time in hospital for operations and I know that it is not as scary as it sounds! I used to love meeting kids my own age there with similar problems. I am still friends with someone I met when I was 14, it is important that those with JIA can meet each other”

“ I became proactive in the past two years with regard to my own health. For years my parents made decisions on my health. I accepted that I had JIA but never really understood it.

I found my childhood difficult at times. I recently met some new friends with arthritis. We meet up regularly and support each other.

I would like to be able to give the support I receive to a child or parent so that they feel that they are not alone and that others live well with JIA.” Laura, 24. Dublin

Leona, 33. Dublin

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“ I have lived my whole life with arthritis but it is just something I have worked through and come out stronger for it.

Mentors’ Stories

your

“ I’m 21 and I’m studying medicine.

Having been diagnosed with JIA when I was three, I had grown up realising that the condition was a major aspect of my life. It impacted on most, if not all parts of my life, especially school.

I wasn’t the most athletic or sporty person when I was in secondary school, but when I did get involved in any sporting events, I made sure that the coach or teacher in charge was aware of my JIA, as a sort of “by the way”, just in case my joints ever acted up and I needed a break.

I had been advised to use a special chair and table by an occupational therapist when I was in primary school, in order to reduce the strain on my back and neck. This led to my teachers needing to explain its presence in the classroom to the other students.

I was very lucky as a teenager when it came to peer-pressure regarding alcohol. I took my confirmation pledge pretty seriously and wasn’t interested in drinking before I was eighteen.

Whenever I went to parties I would just stand my ground and politely refuse any alcohol offered, and drink a soft drink instead. I didn’t see the attraction of underage drinking! I knew that it was better for my health to stay away from alcohol, especially with my medications; I have continued not to drink alcohol and feel much better for it. My friends in college are very encouraging and supportive of my choice.

I adapted fairly quickly, as did most of my classmates, and thankfully mean comments were few and far between!

Before starting secondary school, however, I was quite anxious about how my special seating situation would go down with my new classmates.

The idea of explaining my medical condition to all these new people was a bit daunting. My parents had informed the school of the JIA, and they were very understanding and accommodating.

I hated doctors and hospitals for the first few years of my life. Some of my earliest memories are of being stuck with a needle as a doctor tried to take blood! I later realised that despite sometimes unintentionally causing pain, medical professionals are really only trying to help people as best they can!”

For me it was definitely an advantage telling my school about my condition.

The teachers didn’t explain why I had a very comfortable-looking office chair, but joked about it during the first few days.

It was left to me to explain why I had it.

I kept it brief and to the point, “I have arthritis. The chair and table make it easier on my neck” and no greater issue was ever made of it. I’d be a liar if I didn’t admit that I did feel a little bit different from the rest of the class.

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My name is Máirtín,

Mentors’ Stories

your

“ I was diagnosed with JIA when I was 10.

For me the news came as a relief, at last I had an answer as to why I was in so much pain. At first I just accepted that I had arthritis but as I got older I wanted to learn as much as possible about JIA.

My first assignment in college was a communications presentation. I presented a case study about a young adult who has arthritis. I spoke about this girl and about how arthritis affected her and then at the end of the presentation I told my class that the girl was me. I found by educating my class they were more understanding.

I began to really struggle with having arthritis when I was 16. I found it tough growing up with a disease that wasn’t easily visible to others. School was difficult until I explained to my teachers how JIA affected my daily life .

For me this was the easiest way to tell everyone at once and they treated me the exact same as everyone else but with a little understanding when I needed it. If I missed classes because of my arthritis they would email me their notes.

I was once told that I was too sick to go to college and perhaps I should undertake something a little less challenging. That made me more ambitious and determined to succeed.

I finished school and I went on to complete a Bachelor of Business & Finance, a Masters in Finance and I am currently undertaking professional chartered accountancy exams.

My first couple of weeks away from home brought many late nights and with a party to attend every night, I soon found the fun catching up on me and I was bought back to reality with a bad flare up which took me a while to recover.

I’ve always been quite open about having arthritis. For me I find each life stage brings different challenges.

From then on things changed. To prepare for nights out I make sure I have a lot of rest before and after, I make sure it’s safe to drink alcohol with my medication and I don’t overdo it. I recently attended a course Living Well with Arthritis ran by Arthritis Ireland where I discovered that I have the ability to take control of my arthritis and there is a lot I can do help myself.

While I was in school my peers knew I had arthritis but I found it difficult to tell people as I got a bit older so when I went to college I knew people would ask me “oh what happened?” when I was wearing splints or if I was using crutches.

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My name is Laura,

When it comes to starting a relationship when you have arthritis, it can be somewhat daunting.

Initially it caused me a great deal of stress.

I thought my boyfriend would run a mile once he found out I had arthritis or when I had a flare up. I didn’t want him to see me differently nor did I want him to think I was made of glass. He was very understanding and supportive though.

One day we went for a walk I was doing ok for the first few minutes then I couldn’t move I was in so much pain. He picked me up and brought me home where he got all of my favourite things together so I didn’t have to move and cooked my favourite dinner. He made a bed for me in the sitting room so I didn’t feel I was missing out.

Just by having him there making me laugh I was distracted from the pain I was in. He understands that I can’t always do everything and we work around that together.

Yes, your arthritis impacts on your life but you can have positive experiences. Six years on and my relationship is still going strong.”

Laura

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Fizz Friends & Positive Future

The one thing I regret is not meeting others with arthritis at a younger age. Before I never felt like I needed to meet others with arthritis but now that I have friends my age with arthritis I can’t imagine how I coped without them. It’s such a fantastic thing being around people who know exactly how I’m feeling.

Mentors’ Stories My name is Leona,

your

Last year I met her again, she remembered me and apologised when she saw I had accomplished what I wanted. I had bilateral hip replacements in 1994 during my summer holidays and was almost immediately out of the wheelchair, using crutches. I completed my Leaving Cert the following year and went on to study biomedical science in DIT Kevin Street.

At the same time I was able to hop balls off the school walls or swap fancy paper like my friends did. There were no wonder drugs like the biologics we have today so often I would have ‘flareups’. Most of my teachers were very understanding.

My lecturers were very understanding.

During lab practice, they would set up a lower bench area because of my short stature which meant it was hard to reach equipment. They arranged extra time for me during exams. Over the five years there, I had my knees replaced (also during summer holidays).

My first primary teacher was great and had no problem when I arrived into the classroom on my red tricycle because I was too sore to walk! I was also lucky to get home tuition when I was absent with a flare up.

I gained complete independence during my third year when I bought my first car. My mam had put away some money from my illness benefit for me each month.

In secondary school I made great friends regardless of my disability.

I went away on weekends with the Irish Club, went to the cinema, had friends over and talked about boys. I did Transition Year and did a week of work experience in a laboratory in St. Vincent’s Hospital.

She looked into the disabled drivers’ scheme which exempted me from VRT and VAT because I had to get my car adapted. I got an automatic with hand controls and with it a new lease of life!

After I completed my third year inservice training in St James’ Hospital, I moved out of home into my first apartment with two friends.

I knew then that I wanted to study to become a laboratory worker. During that week I met a lab technician who suggested I might be better off studying computers because I was in a wheelchair at the time.

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“ I was diagnosed with JIA at the age of 3.

I am 34 now and how life has changed since then! I suppose I didn’t have the usual childhood in some ways, like I couldn’t run around with the school kids in the yard or do tumbles in PE.

your

Fizz Friends & Positive Future

Freedom at last… In 2000, I graduated with an honours degree and have worked in the laboratory at Tallaght Hospital since 2001.

I went back to Kevin Street in 2006 and completed a Masters in Science.

Of course, it was a long journey to get here but it has been worth it. There were times when I was so sore I couldn’t concentrate on my assignments so had to get extensions. I had to repeat some exams at the end of summer but I always got through.

And I took great advantage of the social life that college has to offer.

When you’re in college, it’s actually ‘cool’ to be different so I was accepted straight away.

To be honest, I really wasn’t all that ‘different’ from the many characters I met along the way.”

Leona

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Directory

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Contents Transition clinic contacts Other useful contacts Your arthritis A to Z

72 73 76

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ST. VINCENT’S UNIVERSITY HOSPITAL Main switch: Bone & Joint Unit: Nurse Base 1: Nurse Base 2: Website:

01 2214 000 01 2213 638 01 2214 770 01 2214 860 www.stvincents.ie

OUR LADY’S CHILDREN’S HOSPITAL, CRUMLIN Main switch:

01 4096 100

THE NATIONAL CENTRE FOR PAEDRIATRIC RHEUMATOLOGY Tel: Website:

01 4096 256 www.olhsc.ie

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directory

Transition Clinic contacts:

ARTHRITIS IRELAND Helpline: Email: Website:

1890 252 846 or 01 661 8188 helpline@arthritisireland.ie www.arthritisireland.ie

AHEAD

Tel: Web:

Association for Higher Education Access and Disability 01 716 4396 www.ahead.ie

AWARE

Helpline: Website:

Aware is a national organisation that provides support in dealing with depression.

LoCall 1890 303 302 www.aware.ie

BELONGTO

Telephone: Website:

An organisation for lesbian, gay, bisexual and transgender young people aged between 14 and 23 01 670 6223 www.belongto.org

BODYWHYS

Helpline: Website:

Bodywhys is the national voluntary organisation dedicated to supporting the 200,000 people in Ireland affected by eating disorders. LoCall 1890 200 444 www.bodywhys.ie

CHILDLINE

Helpline: Website:

Free listening service for children up to the age of 18 1800 666 666 www.ispcc.ie

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Other useful contacts:

Other useful contacts...

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Tel: Website:

The Citizens Information Board is the statutory body which supports the provision of information, advice and advocacy on a broad range of public and social services.

1890 777 121 www.citizensinformation.ie

HSE HEALTH PROMOTION

Website:

Working to promote health in Ireland. This site has links to many other useful sites and services. You can link to information on alcohol, drugs, mental health etc. www.healthpromotion.ie

IRISH FAMILY PLANNING ASSOCIATION

Helpline: Website:

Sexual health charity providing sexual health services, counselling and education.

1850 495 051 www.ifpa.ie

YOUR MENTAL HEALTH

Website:

Information, help and advice with the most common mental health issues affecting young people. www.yourmentalhealth.ie

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CITIZENS INFORMATION

Other useful contacts...

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NATIONAL SMOKERS QUITLINE Tel: Website:

1850 201 203 www.quit.ie

POSITIVE OPTIONS

Website:

This website is designed to help you find a counselling service that will support you in dealing with a crisis pregnancy. All of the services listed on this website provide free, non-judgemental counselling and support. www.positiveoptions.ie

QUALIFAX

Website:

The National Learners Database. www.qualifax.ie

REACHOUT

Email: Website:

Web-based service that inspires young people to help themselves through tough times, and find ways to improve their own mental health and well-being. info@inspireireland.ie www.reachout.com

ROAD SAFETY AUTHORITY Website:

www.rsa.ie

SAMARITANS

Helpline: Website:

Confidential non-judgemental emotional support available 24 hours a day.

1850 609 090 www.samaritans.org

SPUNOUT

Tel:

SpunOut is an independent youth powered national charity working to empower young people to create personal and social change.

091 533 693

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A Acute

Rapid or sudden start of symptoms. It is sometimes painful and serious.

Anaemia

A medical condition where the blood has a lower amount of red blood cells than normal.

Analgesic

This is a medicine you can take to help ease your pain.

Antibody

Proteins in the blood that fight different infections.

Ankylosing spondylitis Inflammation and stiffening of the joints of the spine. It is also known as AS. Antibiotics

Drugs that kill or slow the growth of germs.

Anti-inflammatory

Something that reduces swelling, heat and pain. It is usually a medicine.

Arthritis

A problem with the joints that causes swelling, pain, heat and a sense of stiffness.

Articular

Of or relating to a joint.

Arthroscopic

A way for a surgeon to look into your joint with a camera.

Aspiration

Drawing fluid from the body using a syringe.

Auto-immune disease

A disease of the immune system that makes it attack your own body. Rheumatoid arthritis is an auto-immune disease.

B Baker’s cyst

A swelling behind the knee, usually due to arthritis, that is made up of fluid from the joint.

Biologic medications

Specialist treatment for certain kinds of arthritis.

Bursitis

Inflammation of a bursa. A bursa is like a tiny pillow filled with fluid between the tendon and the bone. It is not arthritis because it is outside the joint.

C Calcium

A mineral that is important for a range of bodily functions and that you take in as part of your diet.

Cardiovascular

Relating to the heart and blood vessels.

Carpal tunnel syndrome A common painful condition caused by pressure on a nerve at the wrist.

Cartilage

The smooth covering on the end of bones.

Cervical

Relating to the neck (also relating to the cervix, the opening of the womb).

Chronic

Does not go away. Long term.

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Your Arthritis A to Z

Work or studies in a medical setting that involve patients.

Connective tissue disorder

A general term for rare diseases such as lupus (Systemic Lupus Erythematosus), scleroderma, muscle inflammation and Sjogren’s syndrome.

Consultant

A senior doctor who specialises in an area of medicine or surgery.

Contagious disease

An illness that can spread from person to person.

Corticosteroid

A medicine that can be taken as a tablet or injected directly into a tissue or joint. It reduces the activity of the immune system. It is also known as a steroid.

Cushingoid

Signs and symptoms of high doses of corticosteroids. Some signs are thinning of the skin and weight gain around the face, as well as the upper back. These changes go back to normal after the steroids are stopped.

Cutaneous

Having to do with the skin.

D Deformity

A change from the normal shape.

Degenerative disease

A disease that causes damage over time.

Dermatologist

A doctor and specialist who treats skin problems.

Diagnosis

A condition, disease or a medical answer.

Digits

Medical term for fingers and toes.

DMARDS

Disease modifying anti-rheumatic drugs - Medicines that reduce pain, swelling and stiffness. They do not work immediately. They may take several weeks to work.

Dislocation

When a joint is out of its correct position.

E Erosions

Small pits or holes in the cartilage or the bone.

Erythema

The medical name for redness of the skin.

F Fatigue

A tired or weak feeling of the whole body.

Fibromyalgia

A condition involving symptoms such as muscle pain, tenderness, stiffness and tiredness.

Flare

A period of time when symptoms of a disease are worse.

Flexibility

Able to move with ease. Muscles and joints that stretch easily.

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Clinical

G A form of arthritis caused by a build up of uric acid crystals in the joints.

H HAQ

Health Assessment Questionnaire - A standard set of questions to find out about all aspects of a person’s health.

Hormones

Natural chemicals made by your body. Scientists can also make them. These chemicals are important for many body functions.

Hydrotherapy

The use of water to soothe pain and improve mobility.

Hypermobility

Being able to move joints further than normal, commonly known as being ‘double-jointed’.

I Immune system

The part of your body that fights against germs.

Inflammation

Swelling, redness, heat and pain. This happens when parts of your body are hurt or react to illness. The body sends extra blood cells to the place that is hurt.

Infusion

A way to give fluids or medicine directly into a vein.

Inhibit

To stop or hold back something.

Injection

To give medicine by needle under the skin, into a muscle or into a joint.

Injection site reaction

Redness and swelling in the area where an injection was given.

Intern

A junior hospital doctor.

Intravenous

Putting fluids or medicine into a vein by using a needle.

Immunosuppressants

These medicines suppress (limit) the activity of the body’s immune system.

J Joint

The place where two bones come together. This is where we can bend and move.

L Ligament

A strong band that holds a joint together.

Lipids

Another word for fats.

Localised

In a small area or only in one place.

Long-term

A long time, more than just weeks or months.

Lumbar

Refers to the part of the back between the ribs and the hips.

Lupus

A chronic disease where the skin, joints and internal organs can become inflamed. It is also known as Systemic Lupus Erythematosus (SLE).

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Gout

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M

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Able to move around.

Musculoskeletal

Relating to or involving the muscles or skeleton (bones).

Osteoarthritis, rheumatoid arthritis and back ache are examples of musculoskeletal diseases.

Myositis

Inflammation of the muscles, which can lead to muscle weakness.

N Narcotic

A strong medicine that takes away pain. It can make you sleepy and your body can grow to need it.

Neurologic

Having to do with the nervous system. The nervous system includes nerves, the spinal cord and the brain.

Nodule

A small lump or swelling.

NSAIDS

Nonsteroidal anti-inflammatory drugs - This is a medicine prescribed by a doctor which treats pain.

Specialist Nurse

A nurse who has completed extra training in a specific medical skill area and can help you manage your condition.

Nutrition

Food; healthy eating to help your body grow and repair itself.

O Obesity

A medical condition in which the build up of too much body fat results in poor health.

OT

Occupational therapist - A professional who helps people who are ill or injured learn better ways to do everyday activities such as dressing, cooking, working or driving.

Oedema

A condition caused by having too much fluid, which causes swelling of the body’s tissue.

Ophthalmologist

A doctor who specialises in eye problems.

Oral

Relating to the mouth or to take by mouth.

Orthopaedic surgeon

A doctor who operates on bones and joints.

Orthotic

The design and use of external appliances to support specific muscles, promote a specific motion or correct deformities.

Osteoarthritis

Also known as OA, this is the most common kind of arthritis. The most common symptoms of OA are stiffness and pain.

Osteopenia

A lower than normal bone density that can lead to osteoporosis.

Osteoporosis

Thin and weak bones that break easily.

Outpatient

A person who is treated by hospital staff in a day clinic.

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Mobility

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Specialist doctor working with children.

Patella

The medical term for the kneecap.

Partial dislocation

When a bone is out of position in a joint but the bone surfaces still touch.

Pharmacist

A trained person who prepares medicine. This person makes sure you get the right kind and amount of medicine that your doctor prescribes.

Physiotherapist

A trained professional who helps patients learn ways to reduce their pain. Also known as a physio. A physio helps patients increase and maintain their movement and muscle strength.

Pigmentation

The colour of the skin.

Platelet

Cells in the blood that help stop bleeding.

PMR

Polymyalgia rheumatica - A disorder of the muscles and joints involving symptoms such as pain and stiffness, which involves the shoulders, arms, neck and hips and affects both sides of the body.

Posture

The way in which somebody holds their body, especially when standing.

Prescription

Written directions from your doctor to the pharmacist about your medicine. Also known as a ‘script’.

Prognosis

Prediction of the probable outcome of a disease based on the condition of the person, and the usual course of the disease in similar situations.

Proteinuria

The abnormal presence of protein in the urine.

Psoriasis

A dry scaly skin rash.

Psoriatic arthritis

A disease that causes psoriasis on the skin and inflammation in many joints.

R Radiologist

A doctor who looks at and studies x-rays and other images to diagnose health problems.

Raynaud’s syndrome

A medical problem that causes the blood vessels in the fingers and toes to narrow and let less blood through when they are cold. The fingers and toes become pale and feel uncomfortable.

Reactive arthritis

A type of arthritis that causes pain and swelling in the joints because of an infection elsewhere in the body.

Rehabilitation

Restoring skills by a person who has suffered an illness or injury so they can do as much as possible for themselves again.

Remission

A period of time when a disease shows no symptoms or signs.

Renal

Having to do with the kidneys.

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Paediatrician

Rheumatoid arthritis

A disease that causes inflammation in many joints.

Rheumatologist

A specialist who treats conditions involving the musculoskeletal system. The musculoskeletal system is made up of bones, muscles, tendons, ligaments, joints, cartilage, and other connective tissue. Rheumatologists medically treat diseases, disorders, etc., that affect the musculoskeletal system including many autoimmune diseases like JIA.

S Scleroderma

A chronic disorder marked by hardening and thickening of the skin.

Sciatica

Pain typically felt at the back of the thigh because of irritation of the sciatic nerve.

Scoliosis

A condition that causes the spine to curve to the side.

SHO

Senior house officer - A junior doctor in hospital that is more senior than an intern.

Septic arthritis

Arthritis that causes infection in a joint.

Sero-negative

Means that the blood test for Rheumatoid Factor came back negative.

Side effect

A reaction caused by a medicine.

Sjogren’s syndrome

A medical problem that causes the eyes and mouth to be dry.

Spasm

A sudden tightening of muscles.

Specialist

A doctor who has completed extra training in a specific medical skill area.

Specialist registrar

A doctor in a hospital who is training to become a consultant.

Splint

Something that supports a joint and prevents the joint from moving.

Spondylitis

A form of arthritis causing chronic inflammation of the spine.

Spondylosis

Arthritis of the spine that is degenerative (gets worse over time).

Stamina

Endurance, able to be active over an entire day without feeling tired or exhausted.

Steroid

Medicines used to decrease inflammation. Hydrocortisone and prednisolone are examples of steroids.

Stress

Physical, mental or emotional tension or strain.

Stress fracture

A small break in a bone caused by only minimal trauma (impact).

Susceptible

More open to.

Symptom

A feeling or physical sign that may be due to an illness or disease.

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Repetitive strain injury Pain caused by using same muscle or muscles repeatedly.

A joint that allows a range of movement - the most common type of joint in the body.

Synovial fluid

A thick fluid found in the spaces of the synovial joints.

Synovitis

A condition that causes the lining of the joint (called the synovial membrane) to become inflamed.

Systemic

In all parts of the body.

T TMJ

Temporomandibular joint - The joint that hinges the lower jaw to the skull.

Tenosynovitis

A condition that causes the lining of a tendon to become inflamed.

TENS

Transcutaneous electrical nerve stimulation - A device which uses small pulses of electricity to relieve pain.

Therapy

Action to help a disease, illness or injury.

Treatment

The action or medicine used to take care of a disease or injury.

TNF

Tumor necrosis factor - A cytokine (type of protein) that helps to regulate immune cells.

U Ulcer

An open sore that can be inside or outside of the body.

Uric acid

A waste product normally present in the blood after the body breaks down a natural chemical called purine. The body usually gets rid of uric acid through urine.

Urine

A liquid waste made in the kidneys.

Urinalysis

An array of tests that can be carried out on a urine sample.

Uveitis

A condition that causes the middle layer of the eye to become inflamed.

V Vasculitis

A condition that causes the walls of the blood vessels to be inflamed.

Vertebra

One of the bones in the spine.

Vertebroplasty

Surgery to repair damage to a vertebra

VAS

Visual analogue scale - A test that uses a line to find out a person’s level of agreement to a question asked. To measure pain the scale can run from ‘no pain’ to ‘very severe pain’.

Z Zen

Get the balance right and live well with your arthritis!

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Synovial joint

Sponsors: Developed by Arthritis Ireland in partnership with St. Vincent’s University Hospital and Our Lady’s Children’s Hospital, Crumlin.

Supported by AbbVie All content and views expressed are those of Arthritis Ireland, not of the sponsors.

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