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JIA Journeys

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

Publié dans : Santé
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JIA Journeys

  1. 1. JIA JOURNEYS… Simon Stones Patient Leader and Advocate Saturday 29 September 2018
  2. 2. You’re far too young to have arthritis! 3
  3. 3. 4 You never know how strong you are, until being strong is the only choice you have
  4. 4. MY JOURNEYwith JIA 5
  5. 5. 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
  6. 6. 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
  7. 7. 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!”
  8. 8. 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.
  9. 9. 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!”
  10. 10. Transitions in life can be turbulent, especially with JIA 11 2004 2005 2010 Primary School Secondary School Sixth Form College University 2012
  11. 11. A constant challenge has been navigating the system and co-ordinating care 12 When young people and families are the co- ordinators
  12. 12. 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?
  13. 13. 14 Sincere apologies to whoever had the task of photocopying all of my notes…!
  14. 14. MY JOURNEYwith JIA advocacy and research 15
  15. 15. 16
  16. 16. 17
  17. 17. Advocacy has changed my life… 18
  18. 18. 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
  19. 19. Versus Arthritis Patient Insight Partners 20 Website: https://www.versusarthritis.org/research/involving-people-with-arthritis/our-patient- insight-partners/ Email: patientinsight@versusarthritis.org
  20. 20. GenerationR – young people and parents/carers improving research 21 Email info@generationr.org.uk for more information!
  21. 21. 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.
  22. 22. 23 In the end, the pain you feel today will be the strength you feel tomorrow.
  23. 23. 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.
  24. 24. 25 TIME FOR QUESTIONS! Thanks for your time today. Find me on Twitter: @SimonRStones or email simon@simonstones.com