We’re reviewing our health information – we need your help!

PeterJ

We want to make sure our health information is as useful as possible to those who need it and we’d really welcome your input. When it comes to our health information, we need the views of the people who read it and use it; you! Whether you’re newly diagnosed or you’ve had one of the conditions we support for years or you’ve never read our information at all – your input is equally vital to us! 

If you’ve used any of our health information – either printed booklets or online, even if it’s not an arthritis-specific piece, like fibromyalgia or lupus – then we want to know what you think of it. What’s good, what’s not so good, and is there anything missing? 

Even if you just have some general thoughts on what you need and expect from a piece of health information, that’s still important for us to know. 

It should only take about 10-15 minutes and it will help countless others in the future. 

Let us know your thoughts online at: https://forms.office.com/e/TC2hgkg7Rw 

SteveWright

Hi all

I'm Steve, the Content Manager here at VA. If you have any questions before filling it in or during filling it in, I'm more than happy to help, so give me a shout. I've worked with many people with arthritis and associated conditions (my ex-partner had fibromyalgia and it took years to get a diagnosis so I understand the frustration that can come with conditions like these) and the people in my team interview PwA every day to get your stories and I have heard some incredible things. So your say is essential to us because without you and your input, our health information wouldn't exist. So please let me know if you need anything.

Thanks all

Steve. :)

Anna

Thanks @SteveWright, and welcome to the online community!

Anna ( Moderator)

stickywicket

I've no idea why but there has never been any info - or even a listing - on Stills Disease which was my original diagnosis before it morphed into RA in adult life.

I don't mean Adult Onset Stills (AOSD). Plenty on that. Just the common or garden childhood Stills. I think it should at least have a mention.

Thanks and good luck with the updating😀

SteveWright

https://community.versusarthritis.org/discussion/comment/710855#Comment_710855

Hiya Stickywicket

I've done some digging on this and my team have told me that Stills Disease is covered in our JIA content in the link below...but it's referred to as Systemic-onset JIA. I didn't know until today, so I've learned something! However, this is good feedback as we can add something similar as an 'also known as' if you feel that is something that would be helpful.

This is the kind of feedback we need, whether it's small changes that can be a difference to someone or larger changes that need to happen.

Also if you'd like to review the content from your perspective or our RA content, please do with the link above.

Juvenile idiopathic arthritis (JIA) | Symptoms, treatments (versusarthritis.org)

Rheumatoid arthritis | Causes, symptoms, treatments (versusarthritis.org)

And yes, my namesake is definitely one of my favourite mindboggling comedians 😂

Steve.

stickywicket

Thanks, Steve. When I've tried to look it up I think I've always gone to yóur alphabet of types of arthritis and been surprised it wasn't there. It never occured to me to go to JIA as that has never figured in my diagnoses (though I suspect that, now, my original diagnosis would be JIA. I'm not sure it figured in 1961😉 I was simply told that, if you got RA before you were 16, it was called Stills Disease. Mind you, I did have the characteristic salmon Stills rash back then. Ah, a weed by any other name! I'll check out the links this evening. Kitchen now beckoning.