Anyone had systemic JIA as a child?

stephibabe2
stephibabe2 Member Posts: 60
edited 5. Apr 2010, 17:36 in Living with Arthritis archive
Hey everyone :) a regular visitor :D ,

I posted a similar message in the young peaoples forum but didnt get much reply. Im nearly 18 and have systemic JIA since I was 5. I recently had a bad flare although I was told I should grow out the systemic side of JIA byt the time I was 16. Now I'm not sure what will happen in the future. Do I face having flares like I have had for the rest of my life? Or because this flare was the most severe will I not have any but left with Polyarticular JIA ?
Has anyone had any experience of this? As its very rare I haven't spoke to many people who has been through similar circumstances as me. I am really anxious about the future. I have lost all the confidence I did have after this latest flare and I am finding it particulary difficult. Most of my friends have continued with life (as they should) while I have been ill. Now I feel left out (as most of them are off to Uni), shy and not as close to them.

It would be great if someone could tell me about their own experiences or any they have heard about.
Thanks, & take care everyone x x

Comments

  • valval
    valval Member Posts: 14,911
    edited 30. Nov -1, 00:00
    hi can not help but wanted to bump this back to top some one else might be able to help or try help team they do know a lot and can prob help good luck.
    as for your friends do not be shy with them they have a lot of new stuff going on but you r still there friend so do not worry they will love having you over to visit and go out with them when you feel up to it they r the same people. what r you doing have you gone to collage are you looking for a job you have lots of new experiances as well so keep in touch on fb or twitter do not loose touch with people
    val
  • dorcas
    dorcas Member Posts: 3,516
    edited 30. Nov -1, 00:00
    Hi steph,

    I don't have experience of JIA but am so concerned to read how you are feeling just now and how this disease is impacting on your life.

    It must be very hard to feel that your friends are moving on with their lives and that arther is preventing you from experiencing the same opportunities.... You haven't said what your interests are or what are you hoping to do. If you are considering uni have you had advice from careers or contacted student support at uni to discuss courses? there may be more options and support available to you than you are aware of...so please consider getting advice and information.

    With regard to the JIA have you had a chance to ask your doc or consultant about this recent severe flare? perhaps it would be helpful to speak again with them......

    I hope that there are other peeps here on the forum who can answer your questions about JIA but please consider contacting the helpline to talk this through....they will listen and talk through your concerns and may have the information you're looking for; and/ or can signpost you to a JIA support group or website....

    take care lovely...we are here to support you..so keep posting.

    Iris x
  • wibberley
    wibberley Member Posts: 421
    edited 30. Nov -1, 00:00
    Hiya Stephibabe,

    So sorry to hear you are having a rough time of it at the moment, and I so agree with you on the lack of info on JIA.

    I was diagnosed with JIA (Stills disease) aged 7. It burnt itself out after a couple of years and I was symptom-free until aged 22-ish, when I think the stress of organising my wedding caused a flare. Managed it okay with voltarol and the occasional steroid jab and it again burnt out after a couple of years.

    Apart from the odd very short blip (Bakers Cysts) I've been okay until recently. No relapses after the birth of 3 kids or anything like that. Personally, I think this recent relapse at aged 43 is connected with hormones (or lack of them!) but no-one can confim that. Am managing on just sulpha for now and am really, really hoping that as before, it will burn itself out again.

    Hannah Goodwin is another JIA sufferer on here and she's about to attempt a 10K, so there's another positive experience for you! I do hope you get some relief soon and can only say, hang on in there, life will resume some form of normality for you soon!

    Take care,

    Lois x
  • dobbie
    dobbie Member Posts: 12
    edited 30. Nov -1, 00:00
    Hi Steph,

    I was diagnosed with JRA at the age of 3 and I was told it would burn itself eventually. I started having regular flares which were severe from the age of 18. My medical records still had my diagnosis as JRA (my sick notes even had that as my reason for absence!) until last year when my new rheumy said it was obvious that I should have a diagnosis of RA as I'm almost 30!

    Sarah
  • wibberley
    wibberley Member Posts: 421
    edited 30. Nov -1, 00:00
    My consultant also still refers to my Juevenile Inflammatory Arthritis and I'm almost 44!

    Is there anyone out there that can beat that???

    Lois x
  • stephibabe2
    stephibabe2 Member Posts: 60
    edited 30. Nov -1, 00:00
    Thanks Iris for your message :)

    I have always been intrested in working with children and am currently in my second year of a college course. The first year was great although I found working in the nursery really hard work. However my flare began in October and although Im much better than I was Im still recovering and my Dr is looking into a new medication. My college tutor has been realy supportive and she is just helping me get all the written work done so I can pass the course.
    I was looking at Unis and courses in september time and had a good idea of what course I wanted to do. However the application form needed to be in around febuary time. I hadn't spoken to any Unis and had only visited one so it just made it impossible to apply. However, its not just this, Im now concerned whether I will be able to continue in the childcare proffesion due to how my arthritis affects me.
    Yeah I am seeing my rheumy quite reguarly at the moment but there mostly concerned with sorting my condition out at the moment. However they always say 'I can't really answer that' or 'I don't know'. So no one seems to have any answers it seems -.-
    Therefore was just wondering if any has or has had SYSTEMIC as it seems quite different to other types of JIA.

    Thanks everyone else for your messages, all your thoughts are helpful. Best wishes to everyone as always (: x x
  • dobbie
    dobbie Member Posts: 12
    edited 30. Nov -1, 00:00
    Hi Steph,

    I too wanted to work with children and somehow managed to finish my childcare course and was employed in a nursery. They had no issues about my RA and i was very honest abot the problems I was having. I did have to leave my job (my choice) because it was too physically demanding for me and had a complete change of career.

    My arthritis has been called many differently over the years depending on who I've seen- polyarthritis, juvenile arthritis, JRA until my final diagnosis of RA. They are all basically the same and RA is a systemic disease beacuse it affects the whole body not just the joints.

    Hope you get some answers soon
  • chahoua
    chahoua Member Posts: 29
    edited 30. Nov -1, 00:00
    I can empathise with you. I was diagnosed with JCA (Juvenile Chronic Arthritis) when I was 18 months old. Then when I was 7 I was diagnosed with Psoriatic Arthritis. I was told (well my parents were) that with every life milestone (puberty etc) it would burn itself out. Sadly for me it never did. During my school days I suffered with lengthy flare-ups (usually six weeks at a time) and thus was off school for long periods. I do understand what you mean when you say your friends got on with their lives. During my absences my friends used to come round to visit me and I always felt like I was missing out even though they were lovely and always tried to include me in things.

    When I left school, I didn't have the required GCSEs to go on for A-levels so I resat some. To cut a long story short I was determined to get a degree. I went to uni two years after my school friends. I got my degree but it did take me longer (5 years as opposed to 3). I would say if you are going to uni make sure you get all the help which you are entitled to. Get to know the Disabled Student advisor who will inform your tutors of any help you need (printed lecture notes, extensions, extra time in exams etc).


    Regards Jackie xxx