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Debrief: WORD day 2022

World yOung Rheumatic Diseases day 2022 (WORD day) was bigger and better than ever before, raising awareness globally that children and young people can get rheumatic diseases such as Juvenile Idiopathic Arthritis (JIA).

Why WORD day?

WORD day was started in 2019 as an annual event to raise awareness of rheumatic diseases in children because awareness is often the first step in diagnosis. It has become the biggest day of the year in the JIA calendar and is making a real difference in changing the lives of children with JIA and other rheumatic conditions. As awareness increases, referrals to paediatric rheumatology are made in a more timely manner helping children get the right diagnosis and treatment they need. You can find out more about WORD day at https://wordday.org/about-word-day/

WORD day and #ThinkJIA

The aims of WORD day align very closely to the aims of our own #ThinkJIA campaign which raises awareness amongst frontline health professionals, parents, schools and communities. #ThinkJIA helps to educate on the key signs and symptoms of JIA, encourages referral to paediatric rheumatology and for sight tests to check for uveitis, and signposts to further information.

By speeding up the sometimes lengthy journey to diagnosis, the chances of long-term joint damage are reduced as well as enabling access to vital monitoring for JIA-related uveitis. Whilst a child is waiting for a diagnosis, they may be living in constant pain and unable to do some of the most basic activities that many of us take for granted such as walking or playing sports, writing or even chewing food.

So awareness really does change lives. As one parent told us "Awareness is everything".

WORD day bookmark and awareness posters

Our WORD day bookmarks proved so popular back in 2020 when we first introduced them, that we decided to do it again, sending out a whopping 3,500 bookmarks to reach children in over 100 schools across the UK.

Some of those 3,500 people receiving a bookmark may never have heard of JIA before or known that children can get arthritis. Raising awareness has the added benefit of helping those with JIA feel better understood and less alone.

The launch of our newly developed School Toolkit coincided with this, so many of those schools have also been invited to request a free School Toolkit from us. These are available to schools within the UK and need to be requested by the school themselves.

We loved seeing so many children and young people getting involved sharing photos with their "I am not too young for arthritis" posters. This is a great way to raise awareness all year round so we have made printable versions of the poster in our WORD day hub for anyone who wants to raise awareness of JIA.

Other WORD day events and activities

Our WORD day t-shirts were worn at various events including by the EATC Rheumatology team at the World Museum in Liverpool for their Meet the Scientist event run by Liverpool University.

Throughout the week in the run up to WORD day we released a "taster" video from PReS (the Paediatric Rheumatology European Society) which covered many themes that interlink with WORD day in terms of raising awareness and understanding of rheumatic diseases in children and young people. The full videos are well worth a watch at enca.org

We warmed up ready for the big day itself by reposting our series of "Life with JIA" images which we had originally released for WORD day 2021. They are powerful, poignant quotes that those with JIA and their families told us that they wished others knew about what life with JIA is like. You can find them all on our WORD day hub in an easily shareable format.

On the big day itself, on Friday 18th March 2022, we shared a new series of posts focusing on the JIA journey and the road to diagnosis. You can find these on our social media channels.

As well as being WORD day ambassadors, this year it was a huge privilege to have been part of the WORD day committee. We took part in both WORD day webinars, which again are really worth watching if you missed them on the day:

And it didn't stop there...We were invited to take part in Joel Vs Arthritis Twitch live stream the next day. As a fellow WORD day ambassador, Joel works incredibly hard with his awareness and advocacy work. We were lucky enough to interview him last year and you can find the interview here along with links to some of the powerful pieces he has written.

One of the key messages coming out of WORD day this year included the mental health impact of living with a chronic condition such as JIA. So we have developed our Mental Health Hub as a first step pointing to tried and tested techniques as well as signposting to specialist support services. Whilst not every child with JIA will need specific mental health intervention, looking after mental health and wellbeing is important for everyone and it's vital to seek additional support where it is needed.

And finally...

Though it may be our logo on the WORD day ambassadors page, the true ambassadors are each and every one of YOU!

WORD day may happen on one day of the year, but raising awareness of JIA needs to happen all year round.

Thank you for getting involved and telling the world that children and young people get arthritis too!

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