Juvenile Idiopathic Arthritis and the future

Izz
Izz Member Posts: 3
edited 1. Sep 2013, 14:55 in Living with Arthritis archive
Hi there,

I am 26 and have had polyarticular rheumatoid arthritis since I was 4. It affects nearly all of my joints and is quite aggressive. When I was 21 I had both of my hips replaced at once and they have made a massive difference to my life. I am active, working and socialising. I am now starting to worry about the future. 60+ years of a degenerative condition is a pretty frightening prospect and I wonder if I will be able to maintain my independence.

I would really like to hear from other JIA sufferers about how their condition has developed as they got older. How has it been for you? Any advice?

Izz

Comments

  • hileena111
    hileena111 Member Posts: 7,099
    edited 30. Nov -1, 00:00
    Hi Izz
    Welcome to the forum.
    I'm sorry you are going through so much....Afraid I cant help you.
    I've got OA in my hips {hat one replacement} ankle and spine
    Also got other spinal problems.
    All I wanted to say apart from welcome, was do your best to take things day by day......not look 40 years {or whatever} in advance. We are all different and our arthritis changes differently
    Love
    Hileena
  • phoenixoxo
    phoenixoxo Member Posts: 625
    edited 30. Nov -1, 00:00
    Hi Izz,

    It’s good to 'meet' you. I'm 34 and I've had psoriatic arthritis since I was 12, though at the time – due to my age, perhaps – it was labelled 'pauci articular juvenile chronic arthritis'. I've a bit of osteoarthritis too.

    Unlike you, I haven't had any joint replacement surgery. There's scope for plenty, but I'm not a candidate for surgery due to circulation problems. Following an accident in hospital that resulted in a permanent deformity, I'd benefit particularly from a new right knee, as I can't walk properly – inside, I shuffle on crutches; outside, I use a powerchair.

    We may be in different places in health terms, but I understand your concerns about the future. Since my accident, I've felt there's no alternative but to become very philosophical about my condition, but I remember being in my early twenties, still able to participate in life to the full despite all my health problems, and worrying about everything I stood to lose as my health deteriorated. My solution then, and now, was pretty much as Hileena writes – to take each day as it comes. Life is short and anxiety very time consuming. Additionally, there have been a lot of advances in treatments for arthritis, so it isn't set in stone that you'll lose independence. If you don't mind my asking, what meds are you on now? Finding the right treatment can make a great deal of difference :)

    Best wishes,
    Phee
  • stickywicket
    stickywicket Member Posts: 26,707
    edited 30. Nov -1, 00:00
    Hello lzz. Like phoenixe, I was diagnosed relatively young - 15 in my case. I don't think they'd coined the term JIA then (1961). They said I had Stills Disease mainly, I think, because of my age. They did say there was more could go wrong than with adult-onset RA.

    I don't know whether I was lucky or unlucky that DMARDS weren't around then - unlucky, I guess, in that there was nothing to hold back the progress of the disease but lucky that I never got any side-effects from the DMARDS :lol: (NSAIDS were a different matter :roll: )

    I am, by nature, independent but I've learned to take all the help on offer. (Well, quite a lot :lol: ) I have a great husband, two adult sons and two small grandsons who love to help me get up, put on jackets etc. I got my first TKRs aged 35 and still have one of them. The other was replaced about three years ago. In between the hips have also been replaced and my ankles and wrists have fused themselves.

    I don't have a lot of strength and I look as if I've been put together by the grandsons experimenting with lego :lol: but I consider I have a good life. I use a wheelchair when doing long walks (I can walk up to 3/4 mile without it - tho' not two days running :wink: )

    Independence is good but, I find, interdependence is better. There is much that I can't do and much that I take ages to do but there are some things I can do as well as any able-bodied person and I try to concentrate on those while accepting help graciously when I need it.
  • Kittkat
    Kittkat Member Posts: 309
    edited 30. Nov -1, 00:00
    Hello
    Im 23 with arthritis in all joints. I've decided to quit worrying about the future and I feel much better. Plus treatments improving all the time.Although its degenerative it doesnt mean you will crumble away and be able to do nothing and whos to say the arthritis might go away or decrease for a while at some point it does happen.
  • Starburst
    Starburst Member Posts: 2,546
    edited 30. Nov -1, 00:00
    Hi Izz,

    My situation is a bit different to yours in that I have Rheumatoid Arthritis and was diagnosed 4 years ago when I was 21. I think when you're young with a condition like ours, it's natural to look to the future and wonder. As much as I tell myself to live for now because they might even find a complete cure, I'd be lying if I said I don't think "what if?".

    One thing I've learned is to view the concept of independence differently. I have accepted walking with crutches not as sign of weakness but as a method of keeping me more independent. I had a fab night last night in central London but without my crutches, I would have had to stay at home. Whereas I once saw mobility aids and various kitchen equipment as disempowering, I now see it as quite the opposite and they empower me to do what I can in my own way. That said, there is never any guarantee of losing independence, there is a lot of research into inflammatory arthritis going on and researchers are exploring natural options of 'switching off' the immune responses we get. Treatment has come so far in the last 20-30 years, who knows how far things will move on another few decades?

    Hang in there and don't be alone, we are all here and we understand.
  • barbara12
    barbara12 Member Posts: 21,257
    edited 30. Nov -1, 00:00
    Hi Izz
    Its lovely to have you on the forum
    Sorry I wont be much help, but my goodness you were young to have your hips replaced...blimey and both at once I take my hat off to you.
    But I am so glad to see it was a massive help , and made such a difference to your life.
    I see the others have come up with some info..I just want to add my support and say we are always here if you just want to chat or rant.
    You take care xx
  • Kittkat
    Kittkat Member Posts: 309
    edited 30. Nov -1, 00:00
    I also agree with starburst I used to see things like walking sticks kitchen aids etc as weakness but now I realise anything that can help you to stay independent is good. There usually always a way to do the things you want even with bad arthritis.
  • hileena111
    hileena111 Member Posts: 7,099
    edited 30. Nov -1, 00:00
    Hi Izzy
    I think like most of us....I had a real fight with myself before I got various aids {OK so I'm older than you :shock: } but its still hard to give in as you think of it a first but then you realise everything you have is a coping mechanism......not giving in......helps you to do things and go places you wouldn't other wise be able to.
    I have a scooter for very very large hilly place,
    a 4 when rollator which I use most of the time
    A Switch Stick if I'm not going very far and a pair of crutches that I use in our village because I cant get the rollator up the steps that inconsiderate people put at every shop there is :lol:
    Love
    Hileena

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