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Diagnosed with juvenile idiopathic
arthritis (JIA) and hypermobile joints
Diagnosed with slipped
capital femoral epiphysis
Diagnosed with Crohn’s disease
Diagnosed with fibromyalgia
Way back when…
Born: 1st September 1993
Clinic date: 2nd December 1996
Inflamed ring finger
Initially thought to be a metabolic bone disorder
History - Mother: Diagnosed with lupus,
polymyositis, osteoarthritis and osteoporosis
My ‘normal’ childhood
▸Frequent visits to the hospital
▸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!”
When you’re branded with a label
▸I was often the patient
▸People spoke about me while in the
▸They don’t think I would like that
▸I can’t self-inject because I’m far too
▸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?
I am a
Waking up to the unknown most days
Varying pain (severity,
location, duration) Swelling, stiffness and
Increased susceptibility to infections
from tiredness to
Anxiety and feeling
feels as though
the plug has
Transitions in life can be turbulent, especially with JIA
2004 2005 2010
A constant challenge has been navigating the system
and co-ordinating care
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?
Where’s the evidence?
Can it be trusted?
Is it applicable to me?
to whoever had
the task of
of my notes…!
Getting involved in research has empowered me
to take control
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
GenerationR – young people and parents/carers
for more information!
Patient Research Ambassadors
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.
In the end, the pain you feel
today will be the strength you
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.
TIME FOR QUESTIONS!
Thanks for your time today.
Find me on Twitter: @SimonRStones or