Happy New Year and JIA Forum

[WilfDog]

Hi All

Just like to say Happy New Year to you all and thank you.

I haven't been as active on here for a few months due to me completing writing my book on living with JIA. Thankfully it is now finished and published.

This forum has been and continues to be an asset to me and anyone suffering with any form of arthritis however the JIA Healthunlocked forum doesn't appear to be very active and I wondered if there were others on here with JIA?

I hope everyone has a healthy and happy 2025 and I look forward to engaging with folk again

Many thanks

Gail xx

[medway-lady]

I'm glad to say I don't know about JIA but well done on writing a book. Post up its title and where it can be purchased from or send me a link by PM as I'd like to read it. x

[WilfDog in reply to medway-lady]

Thanks, Medway-lady, I suspect there might not be that many people on this forum with JIA, but thought it was a good place to ask. That's really kind of you.

Yes of course

You can read about it here gailmolyneaux.com

Thank you xx

[sylvi]

Happy new year to you as well. What is your book called and what it is about darling. xxxxx

[WilfDog in reply to sylvi]

Hi SylviHope you had a lovely Christmas and you are feeling better.

My book is a memoir about how I've navigated living with sJIA for 50 plus years and the self help I've done to keep going.

Hope 2025 is a good for you, Sylvi

Xx

[sylvi in reply to WilfDog]

I wish the same for you as well.xxx

[Kags1068]

Hello, wilf dog

👋Yes, there are some of us JIA adults out here! I'm also a member of the JIA forum and know exactly what you mean about it not being very active. Plus, mostly, their experiences/expectations nowadays seem so different to mine that it almost doesn't feel like the same disease. I don't know if that makes sense? I'm 56 now and my symptoms began when I was 13. I was diagnosed just after I turned 14. Unfortunately, the disease has been very aggressive and severe (I'm told), with a few apparently rare complications - mostly to do with my eyes. Upto yet, I've had 30 operations ranging from minor to major, and numerous other hospital stays. The operations started at 16, and I initially had my hips replaced at 19, which was my first 'big' operation. Despite all that, I've always tried to get on with my life as best I can. That's a very potted history! I won't expand any more as I don't want to put you to sleep!😁

I'm pretty sure there are other adult JIA members on the site, and unfortunately, some who were diagnosed even younger and have had it longer than I have. I hope that doesn't include you! Hopefully some of them will respond too.

Anyway, congratulations on the book - thats a heck of an achievement. It would be interesting to see how our experiences compare. Finally, a Happy New Year to you. ☺️

Best wishes

Karen x

[WilfDog in reply to Kags1068]

Hi Karen Thanks for your message.

I know a few people with AOSD on here, but you are the first I think off this forum I've found with JIA.

I was diagnosed with sJIA (Stills disease) when I was five.

You sound like you've had a tough time of things. Are all your ops arthritis related?

You are similar to me in terms of when your ops started. My first was about 15 and my hip replacements started at 18.

I too have tried to get on with things as best as I can, with a lot of self help inititiated by my parents at a young age.

Thank you re the book. It has been very cathartic as I didn't know a lot of what happened in my younger days and like you, being diagnosed then is very different from being diagnosed now, but I find a lot of the self help still applies.

Thanks for responding. It's interesting connecting and hearing about others who have lived a similar life and how they have navigated their way through it all, and continue to.

All the best to you

Gail xx

[Stills]

hello, we’ve chatted before I’m certain. AOSD diagnosed in hospital aged 17 in 1979.

Luckily monophasic but joint damage, fever, rashes, fatigue, pain and swelling persist, the worst thing is the constant sore throat and sore eyes.

Gathered other AI diseases in the last few years , LS, IC for example. I manage well however and am grateful for that having read your bio.

A cancer scare proved negative but research led me discover that Stills may have damaged my spleen giving a false cancer reading.

Currently having thyroid investigations due to continued weight loss and other classic symptoms but that could also be attributable to AOSD.

Well done on completion your book, I’ll head to your site for a look thank you and keep well. 📖

[WilfDog]

Hi Stills

It is good to hear from you. We have indeed chatted before, a few times. I remember you saying you were diagnosed at 17. Just a year past the age of JIA diagnosis.

I'm sorry you have other issues too, but great to hear you are managing well at present. I think last time we spoke you were struggling with potential thyroid symptoms. I hope you find a conclusion soon and you had a good Christmas.

Thank you, I hope you keep well too, despite your symptoms at present. Take care xx

[Stills in reply to WilfDog]

I hadn’t realised the age distinction so to be precise I was diagnosed a few months after my 17th with symptoms starting in the months before my actual birthday it just took that long for drs name it AOSD. I often wonder if the timing of it’s appearance is why I got away comparatively lightly compared to some .

edit: do you think it’s possible my diagnosis is wrong , you’ve got me thinking now about the age thing