adult onset stills disease

enaid

I am a mum of a beautiful daughter ,age 18,who was diagnosed with AOSD last week.I am out of my mind with worry-everything I read is fraught with awful things. Can you help me sort through what we need to prepare for . My daughter has just started uni 6 weeks ago .

stickywicket

Hello Enaid. I'm not a member of the Helpline team, just an ordinary forum member but I jumped in because you do sound worried. And, of course, you will be, as this is not at all something you would have expected or wanted.

The first thing I'd say is, don't believe all that you read, especially on the internet. For an informed idea of Stills Disease check out Arthritis Care's own Publications and Resources at the top of the page.

I was diagnosed with Stills Disease 51 years ago when I was 15. I've had my ups and downs with it but, all in all, I've had a good life and I still do have a good life.

I'm sure someone from the Helpines will be along eventually but meanwhile, if you enter 'Adult Onset Stills Disease' into the search engine at the top of the page, you'll find some earlier posts on it and, if you have any specific concerns, why not start a thread on the Living With Arthritis forum? We can't give medical advice but we can share experiences and give support.

enaid

Thank you for jumping in Stickywicket :P.My daughter has been really ill since July and this resulted in her being admitted to infectious diseases . Since then we have felt no one was taking her seriously and as she rarely complains she tried to get on with it . Eventually she got referred to rheumatology and diagnosed last Monday.
looking through the internet is a bit mind blowing I admit-trying to shift through the extreme to the "normal".We are back at the hospital this week and I hope they will give us more information.I will read what you recommend. It is helpful to hear your story regarding being diagnosed at 15 and having a good life for fifty years and beyond -thank you for sharing that with me !

Carol79

Hi Enaid,

I'm Carol, I'm 33 and I was diagnosed 4 years ago with AOSD. I can completely understand your fear and your daughter's, but I agree with stickeywicket, don't believe everything you read. I recall googling AOSD as soon as I was diagnosed and I was so upset and scared, but here I am four years and two babies later, and I am almost living just as healthy a life as I was before. I'm also off any medication at the moment and it seems to be going ok. It's true that some lifestyle changes may need to be made, especially in the beginning, and yes of course some people have it worse than others, but hopefully by speaking to other patients your daughter will realise soon that support is there and it doesn't mean her life is over.

I think most other patients I've spoken to all said the same thing about not having nay information or anyone to talk to at first. So I've recently set up a new website to try to help people in your daughter's situation:
http://pasdassoc.wix.com/pasda#!home/mainPage. Its very rudimentary at the moment, as its been a bit difficult to put my head to it with my two children running around, but I'm growing it all the time so your feedback would be most welcome. It came from discussions on this very forum actually - if you put "anyone out there with Adult Onset Still's disease" into the search option above, you should find our forum thread.

Best of luck and feel free to talk anytime.

All the best,

Carol

helpline_team

Hi Enaid

I can understand that you feel worried and are uncertain as to what the future holds for your daughter.

But as you've seen already from the responses, there is a lot of help and support out there.

I would encourage you to give us a ring , so you can have a chat about the things that are worrying you and help you move forward with them.

All the best

Nick
Helplines Team

enaid

Hi Carole
Thank you for your post.I think as a mum it is difficult to think your daughter may have difficulties ahead.It is helpful to hear that you are doing so great and have two children...eventually that is what I would wish for my daughter when/if it was right for her.
My daughter was a great support to me when I was diagnosed with cancer last year-I think this has made it extra difficult as things were going well ( in remission) and I felt life was good for her again.
We will read your link as I think good positive messages are the things that keep us going .
Nick-I will ring to chat as I have specific questions you may be able to help with
Thank you both