Transcript Slide 1

Juvenile Idiopathic Arthritis (JIA)
NSW Scouts/Guides
Special Needs Conference 2012
Leanne Minny
Cub Scout Leader – 2nd Mortdale
Overview
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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
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
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.
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.
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).
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.
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).
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.
Joint diagram
Symptoms of JIA
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Joint Pain
Joint swelling
Joint stiffness
Fever and general feeling of being unwell
Skin rashes
Anaemia
Vision problems
Fatigue
Stomach Ulcers caused by medication
Experience of JIA
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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
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
Treatment of JIA cont
Treatment of JIA is
• Medication - pain medication, disease
modifying medication (antiinflammatories or biologics)
• Pain medication
• Physiotherapy and Occupational Therapy
• Splints
and this can change very quickly
Medications / Treatments
• Part of managing a chronic illness is having control of
your own medication.
• Children with JIA may be on painkillers, antiinflammatory, 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
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
What does it mean for Scouting/Guiding?
• 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?
• 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?
• 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?
• 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?
• 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
Some feedback from parents of JIA
kids in Scouting/Guiding
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)
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.aihw.gov.au/publication-detail/?id=6442468170
• Arthritis NSW