Share you "story"

ryanbibb93
ryanbibb93 Member Posts: 9
edited 13. Jan 2014, 14:00 in My child has arthritis
Hi all!

I set up a website; www.arthritisinyoungpeople.com to try and raise the awareness of the disease in children and young adults.

I'm looking at adding more stories to the "Your Stories" section of the website and would appreciate it greatly if parents/sufferers could submit their story.

Thanks in advance!

Comments

  • stickywicket
    stickywicket Member Posts: 27,101
    edited 30. Nov -1, 00:00
    I'm no longer a young person, Ryan - far from it - but I was when first diagnosed and I do agree that there's not enough info or awareness of arthritis in young people.

    I've looked at your site and find it beautifully clear and very informative for both young and old arthritics.

    If I may make two suggestions? I think it would be helpful if, when referring to studies, you gave a web reference so that we can read them for ourselves. I have learnt that there are 'lies, damned lies and statistics' and I know that 'statistics' are of no value unless the surveys are conducted under strict guidelines using large, blind, samples of people and control groups.

    I'd also like to see an arthritis site distinguishing between auto-immune versions and osteo. Osteo is not as prevalent in young people but they do get it and what works for one kind of arthritis doesn't work for another.

    Having said that, keep plugging away. You're doing a good job.
  • ryanbibb93
    ryanbibb93 Member Posts: 9
    edited 30. Nov -1, 00:00
    Hi stickwicket!

    First of all, thanks for your reply and your kind works. A lot of effort has gone into the site along with a lot of one man working hours lol, so it means a lot!

    I can see where you're coming form with that and it's a very valid point! I shall do this in the future from now on. I think in two blog posts or so I have referred to medical sites etc. but I will be sure to include information as such to any relevant point I make!

    With regards to your second point, I have got plans already to work on information with auto-immune and osteo in the future when I'm happy with the information on JIA, JRA and RA in young people on the site.

    Regards,
    Ryan
  • AnRuaRi
    AnRuaRi Member Posts: 4
    edited 30. Nov -1, 00:00
    I'm the sort of person who is "well informed" about as many areas as possible. I knew "Juvenile Arthritis" existed, and had a mental image of a person needing joint splints, with severe mobility problems and a possible wheelchair.

    Then I met my wife. She was a sufferer of some form of JA, from around 2, and continues to suffer long term chronic pain in many parts of her body, especially legs and back. She also has severely flat feet, with both Pronation and a dropped Metatarsal. The cause of the pain she suffers from is therefore not differentiable. As an adult she's never had a rheumatic flare up of arthritis in the way our son just has, it's just chronic pain which means our bathroom cabinet would be a gold mine for a junkie (Codine and Morphine tablets in there at the moment, plus crazy amounts of Paracetamol and Ibuprofen) (She also has Gynie problems that do cause flare-ups).
    Add to that my Methylphenidate (ADHD medication - it's a powerfull, abusable stimulant) and a junkie would have a field day.

    2 friends also have Crohn's disease.

    Now that I've been talking to people I know about our son, I find many (or most) people have never heard that kids can get Arthritis.

    considering how common it actually is I find this surprising.

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