1. Juvenile Idiopathic Arthritis (JIA) NSW Scouts/Guides Special Needs Conference 2012 Leanne Minny Cub Scout Leader – 2 nd Mortdale

2. Overview What is Juvenile Idiopathic Arthritis? Different Types of JIA Symptoms of JIA Experience of JIA Treatment of JIA Medication /Treatments What does it mean for Scouting / Guiding? Feedback from parents with kids with JIA in scouting / guiding Handouts Sources of information

3. What is Juvenile Idiopathic Arthritis? Juvenile – Diagnosed under the age of 16 Idiopathic – unknown cause Arthritis – inflammation of joints Other names Juvenile Rheumatoid Arthritis (JRA) Juvenile Arthritis (JA) Juvenile Chronic Arthritis Still’s disease

4. What is JIA.. cont? JIA is an autoimmune disease. The normal role of the body’s immune system is to fight off infections, however when a person has JIA, the immune system starts attacking the body’s healthy tissues. In juvenile arthritis, the immune system targets the lining of the joints, causing inflammation and joint damage. It is one of the most common chronic conditions to affect children – affects 1 to 4 in 1000 children. Some studies report that Australia has the highest % in the world and there are 22000 children with JIA with girls twice as likely to have it than boys.

5. What is JIA.. cont? Age at diagnosis is between 2 and 16 50% of children outgrow JIA with no symptoms/disabilities into adulthood 83% of children with JIA have activity limitations. There are different types of arthritis under the JIA umbrella.

6. Different Types of JIA Systemic JIA. Affects the whole body. Symptoms include high fevers that often increase in the evenings and then may suddenly drop to normal. During the onset of fever, the child may feel very ill, appear pale, or develop a rash. The rash may suddenly disappear and then quickly appear again. Many of the body's joints are affected by swelling, pain, and stiffness. Oligoarthritis. Affects four or fewer joints. Symptoms include pain, stiffness, or swelling in the joints – most commonly knee and wrist joints. An inflammation of the iris (the coloured area of the eye) may occur with or without joint symptoms (called Uveitis).

7. Different Types of JIA cont… Polyarticular arthritis, rheumatoid factor -ve. Affects more girls than boys. Symptoms include swelling or pain in 5or more joints. The small joints of the hands are affected as well as the weight-bearing joints ie knees, hips, ankles, feet, neck. A low-grade fever also might develop, as well as bumps or nodules in areas of the body subjected to pressure from sitting or leaning. Polyarticular arthritis, rheumatoid factor +ve. Affects about 15% of kids with polyarticular. This type of JIA behaves the most like adult rheumatoid arthritis, and kids are at a higher risk of joint damage with erosions than in the other forms of JIA.

8. Different Types of JIA cont… Psoriatic arthritis. Kids either have the psoriasis rash themselves or a close relative. Their fingernails and/or toenails might be affected by the condition. Enthesitis-related arthritis. Most commonly affects the lower extremities and the spine. Kids also might have inflammation where tendons join bones (e.g., where the Achilles tendon attaches to the back of the heel). Enthesitis-related arthritis includes a special group call ankylosing spondylitis (where joints of the low back are inflamed) and arthritis associated with inflammatory bowel disease (Crohn's disease and ulcerative colitis).

9. Different Types of JIA cont… Undifferentiated arthritis. Arthritis that doesn't fit into any of the above categories or fits into more than one of the categories.

10. Joint diagram

11. Symptoms of JIA Joint Pain Joint swelling Joint stiffness Fever and general feeling of being unwell Skin rashes Anaemia Vision problems Fatigue Stomach Ulcers caused by medication

12. Experience of JIA Pain Physical Limitations Reduced Activity Activity restrictions at school Psychosocial impact School performance Body image Growth and development Missing school/events due to medical appointments or flares

13. Treatment of JIA Children with JIA could be seeing a range of specialists General Practitioner Rheumatologist Physiotherapist Occupational Therapist Ophthalmologist Pain Specialists – Psychiatrist, Counsellor, Psychologist

14. Treatment of JIA cont Treatment of JIA is Medication - pain medication, disease modifying medication (anti- inflammatories or biologics) Pain medication Physiotherapy and Occupational Therapy Splints and this can change very quickly

15. Medications / Treatments Part of managing a chronic illness is having control of your own medication. Children with JIA may be on painkillers, anti- inflammatory, biologics and injections – Anti-inflammatory medication can cause internal bleeding and bruising, stomach ulcers – If on Biologics may be susceptible to other illnesses so needs to be informed if other children come down with infectious diseases like measles etc JIA kids may also use other treatments such as heat packs, cold packs, pain away sprays, massages, splints, wheelchairs

16. What does it mean for Scouting/Guiding? The impact on your program will depend on a few things – Attitude of the child – from “I have arthritis but I can do it” or “I have arthritis so I can’t do it” – Attitude of the parents – from “wrap them in cotton wool” to “give everything a go” – Type of arthritis they have – Stage of the illness – “Remission” to “Flare – Medication/Treatment

17. Kids with JIA may appear “normal” one day and have a “flare” another day and this can greatly impact the program. Privacy - Some kids don’t want anyone to know they have JIA, others are okay to tell others. Find out what type of JIA your youth has, what joints are affected and what to look out for as “tells” of a flare Medications and Treatments can change very quickly (ie between the A1 and the event) What does it mean for Scouting/Guiding?

18. Allow the person to decide if they will sit out an activity or not – some kids know they will pay for fun later but consider it worth it. – The advantage of this is that they feel more comfortable requesting to sit out sometimes. – The disadvantage of making them sit out is that they will be less inclined to tell you they are having problems. What does it mean for Scouting/Guiding?

19. Some craft may be difficult or impossible for them to do if they are having a “flare”. Look at working in teams or having some craft items made to various stages May need to have breaks during games or games modified May need mobility assistance May not be able to walk particularly on day 2 of camps May need assistance with dressing, showering and toileting. May need assistance opening containers What does it mean for Scouting/Guiding?

20. Vision may be impaired May not be able to pack own bag or put sleeping gear away Fatigue – look at ways of reducing fatigue on outings by assisting with transport to the start rather than walking, not carrying bags, keeping energy for the “fun parts” or the parts they need to participate in Writing may be difficult somedays – look at different types of pens, chalk etc (chunky style) What does it mean for Scouting/Guiding?

21. Badgework – some of the major items for badgework like hikes, camps may need a “creative” approach. ie for a cub with JIA to walk for 2 hours with a daypack may be impossible but that doesn’t mean they can’t achieve the Grey Wolf. If you need assistance with what is suitable / appropriate contact other leaders as well as people like Mark Burfield What does it mean for Scouting/Guiding?

22. Some feedback from parents of JIA kids in Scouting/Guiding

23. Handouts Arthritis NSW have kindly provided handouts for this conference – Juvenile Idiopathic Arthritis (JIA) Information for parents – Juvenile Idiopathic Arthritis – Guide for teachers and students with Juvenile Idiopathic Arthritis (JIA)

24. Sources of Information http://www.tmj.ro/pdf/2011_number_3_4_404884387613428.pdf http://www.betterhealth.vic.gov.au/bhcv2/bhcarticles.nsf/pages/Arthritis _juvenile http://www.betterhealth.vic.gov.au/bhcv2/bhcarticles.nsf/pages/Arthritis _juvenile http://www.aihw.gov.au/publication-detail/?id=6442468170 Arthritis NSW