This presentation was delivered to parents/carers attending the Children's Chronic Arthritis Association (CCAA) family support weekend on 29 September 2018.

1. JIA JOURNEYS…
Simon Stones
Patient Leader and Advocate
Saturday 29 September 2018

3. You’re far too young to have arthritis!
3

4. 4
You never know how strong you
are, until being strong is the
only choice you have

5. MY JOURNEYwith JIA
5

6. 6
1996
Diagnosed with juvenile idiopathic
arthritis (JIA) and hypermobile joints
Diagnosed with slipped
capital femoral epiphysis
Diagnosed with Crohn’s disease
2008
2004
Diagnosed with fibromyalgia
2012

7. Way back when…
7
Simon Stones
Born: 1st September 1993
Clinic date: 2nd December 1996
Inflamed ring finger
Hammer toe
Initially thought to be a metabolic bone disorder
History - Mother: Diagnosed with lupus,
polymyositis, osteoarthritis and osteoporosis

8. My ‘normal’ childhood
8
▸Frequent visits to the hospital
▸Multiple medications
▸Unpleasant side effects of treatment
▸Repeated absence from school
▸Exhaustion, particularly in the evenings
and at weekends
▸Isolation from friends
▸Inability to participate in contact sports
▸Different from everybody else
▸Growing up too fast
▹ “He’s wise for his years!”

9. When you’re branded with a label
9
▸I was often the patient
▸People spoke about me while in the
room
▸They don’t think I would like that
▸I can’t self-inject because I’m far too
young
▸It would scare me
▸I was going to be a subject in a study
▸How are you coping with your problems
as well as your son’s?
SimonJIA patient
Co-morbid Crohn’s
Review in6/12
I am a
person.
Not a
health
problem.

10. Waking up to the unknown most days
10
Varying pain (severity,
location, duration) Swelling, stiffness and
difficult moving
Increased susceptibility to infections
Miscellaneous
symptoms and
experiences!
Fatigue, ranging
from tiredness to
complete exhaustion
Anxiety and feeling
overwhelmed
“It sometimes
feels as though
the plug has
been pulled!”

11. Transitions in life can be turbulent, especially with JIA
11
2004 2005 2010
Primary
School
Secondary
School
Sixth Form
College
University
2012

12. A constant challenge has been navigating the system
and co-ordinating care
12
When young
people and
families are
the co-
ordinators

13. The internet… a blessing and a curse!
▸A lot of news is made up of health claims – some are fake,
others are genuine.
▸5% of all google searches are for health claims.
▸So, how do you to tell the good from the bad, the truths form
the untruths and the interventions you should do something
about and those you should ignore?
13
Where’s the evidence?
Can it be trusted?
Is it applicable to me?

14. 14
Sincere apologies
to whoever had
the task of
photocopying all
of my notes…!

15. MY JOURNEYwith JIA advocacy and research
15

16. 16

17. 17

18. Advocacy has changed my life…
18

19. Getting involved in research has empowered me
to take control
19
I’ve learnt about my conditions
I’m aware of guidelines to treat my conditions
I’ve developed self-management skills
I’ve found support from peers
I’ve grown in confidence

20. Versus Arthritis Patient Insight Partners
20
Website: https://www.versusarthritis.org/research/involving-people-with-arthritis/our-patient-
insight-partners/
Email: patientinsight@versusarthritis.org

21. GenerationR – young people and parents/carers
improving research
21
Email
info@generationr.org.uk
for more information!

22. Patient Research Ambassadors
22
A Patient Research Ambassador is someone who
promotes health research from a patient point of view.
They could be a patient, service user, carer or lay
person who is enthusiastic about health research and
is willing to communicate that to other patients, the
public, as well as other healthcare professionals.
If you would like to speak to someone in your area
about how to become a Patient Research Ambassador
you can view a list of local contact details.

23. 23
In the end, the pain you feel
today will be the strength you
feel tomorrow.

24. 24
SETTING PRIORITIES!
In groups, list yours and your child’s health and
wellbeing priorities on post-it notes.
Use the priority matrix to see
where your priorities are.

25. 25
TIME FOR QUESTIONS!
Thanks for your time today.
Find me on Twitter: @SimonRStones or
email simon@simonstones.com