Do you know any children or adults living with Juveni... - NRAS

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Do you know any children or adults living with Juvenile Idiopathic Arthritis (JIA)?

Nicola-NRAS profile imageNicola-NRASAdministratorβ€’β€’79 Voters

NRAS also provides support, information & advocacy to those affected by Juvenile Idiopathic Arthritis. Visit our HealthUnlocked JIA-at-NRAS community forum healthunlocked.com/jia or take our #JIAMythBuster quiz https://lnkd.in/gdBr5dq8

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20 Replies
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Kags1068 profile image
Kags1068

Yes, me!!πŸ˜‰

Nicola-NRAS profile image
Nicola-NRASAdministratorβ€’ in reply toKags1068

Hi Kags1068, we also have a poll on our HealthUnlocked JIA forum about common misconceptions you may have come across about JIA. Perhaps 'Adults cant have JIA!' is one of those misunderstandings!? For JIA Awareness Week 2023 we want to bust some of those myths and explain what it really means to live with JIA, so please do share any you have encountered. Thank you!

Kags1068 profile image
Kags1068β€’ in reply toNicola-NRAS

Thanks for that. I'll take a look 😊

Ginger46 profile image
Ginger46

Yes I was diagnosed at 14 with JIA, it was called Juvenile RA back then, remission when 19 then came back before treatment to have a baby. It settled when pregnant and came back with a vengeance 4 months after he was born and lived with it ever since 😊

Kags1068 profile image
Kags1068β€’ in reply toGinger46

It was 14 for me too! An auspicious age perhaps?😳 Hope you are ok 🀞😊

Ginger46 profile image
Ginger46β€’ in reply toKags1068

I hated it but it got me out of hockey, netball etc lol, now just fed up of all the other medical hangers on that tag along but just keep on going as we do, hope you're doing ok too xx

Kags1068 profile image
Kags1068β€’ in reply toGinger46

Much the same here! Like you, I never had to do PE at school again (which was no loss to the sporting worldπŸ˜„). Think I've gone past damage limitation to a salvage operation - basically repair, replace, fuse or deny!!😁 other complications have been a bit of a pain too (eyes mainly for me). Seems to be the way of it, doesn't it? Especially if you were diagnosed before any of the good drugs came along!! I'm guessing you probably were? I had a brief look at your past posts, and it certainly seems like you've had more than your fair share to deal with. As you say, we just keep going regardless. Not much else we can do is there!!πŸ˜‰πŸ˜Best wishes 😊

Nicola-NRAS profile image
Nicola-NRASAdministratorβ€’ in reply toGinger46

We, at NRAS, are trying to drive the conversation on our sister 'HealthUnlocked' site- JIA-at-NRAS- so that anyone affected by JIA can go on and chat with peers and get the support and guidance they need (just like on our NRAS RA site). At the moment, it's a little bit quiet on there so if anyone would like to help to start the conversation by writing posts that would be absolutely fantastic and would hopefully lead to some more engagement on the forum. πŸ™‚

Nicola-NRAS profile image
Nicola-NRASAdministratorβ€’ in reply toGinger46

Good morning! This year in July, for JIA Awareness week, we are going to be focusing on how JIA can affect you differently at various stages of life, highlighting the challenges you may face and the huge impact it can have on school life, work life, social life etc throughout your lifetime. We will be telling the stories of people living with JIA from young children, to teenagers, to adults of all ages. We would love to be able to share your experiences of living with JIA as an adult so please do get in contact if you'd be happy to tell your story by emailing jia@nras.org.uk . Thanks so much, Nicky, NRAS

bpeal1 profile image
bpeal1

Yes - my daughter. She was diagnosed at the age of 11. She’s now 17.

Ginger46 profile image
Ginger46β€’ in reply tobpeal1

I hope she's coping with it all, sending hugs to her xx

Kags1068 profile image
Kags1068β€’ in reply tobpeal1

Like Ginger, I hope she is managing OK too. Hope she's managed to stay as damage free as possible πŸ€žπŸ™‚

bpeal1 profile image
bpeal1β€’ in reply toKags1068

Thank you both. She’s a very determined young lady and tries her best to not let it stop her. It mostly affects 1 knee.

Kags1068 profile image
Kags1068β€’ in reply tobpeal1

I bet she is determined. Good for her. I hope things are and remain stable for her 🀞😊

Nicola-NRAS profile image
Nicola-NRASAdministratorβ€’ in reply tobpeal1

We, at NRAS, are trying to drive the conversation on our sister 'HealthUnlocked' site- JIA-at-NRAS- so that anyone affected by JIA can go on and chat with peers and get the support and guidance they need (just like on our NRAS RA site). At the moment, it's a little bit quiet on there so if anyone would like to help to start the conversation by writing posts that would be absolutely fantastic and would hopefully lead to some more engagement on the forum. πŸ™‚

RAat13 profile image
RAat13

Me, diagnosed with JIA at 13 seropostive RA.

Nicola-NRAS profile image
Nicola-NRASAdministratorβ€’ in reply toRAat13

We, at NRAS, are trying to drive the conversation on our sister 'HealthUnlocked' site- JIA-at-NRAS- so that anyone affected by JIA can go on and chat with peers and get the support and guidance they need (just like on our NRAS RA site). At the moment, it's a little bit quiet on there so if anyone would like to help to start the conversation by writing posts that would be absolutely fantastic and would hopefully lead to some more engagement on the forum. πŸ™‚

BoneyC profile image
BoneyC

If Still's Disease is now called JIA then me too! Dx. age 7.

Nicola-NRAS profile image
Nicola-NRASAdministratorβ€’ in reply toBoneyC

We, at NRAS, are trying to drive the conversation on our sister 'HealthUnlocked' site- JIA-at-NRAS- so that anyone affected by JIA can go on and chat with peers and get the support and guidance they need (just like on our NRAS RA site). At the moment, it's a little bit quiet on there so if anyone would like to help to start the conversation by writing posts that would be absolutely fantastic and would hopefully lead to some more engagement on the forum. πŸ™‚

Nicola-NRAS profile image
Nicola-NRASAdministrator

Good afternoon! Next year in July, for JIA Awareness week, we are going to be focusing on how JIA can affect you differently at various stages of life, highlighting the challenges you may face and the huge impact it can have on school life, work life, social life etc throughout your lifetime. We will be telling the stories of people living with JIA from young children, to teenagers, to adults of all ages. We would love to be able to share your experiences of living with JIA as an adult so please do get in contact if you'd be happy to tell your story by emailing jia@nras.org.uk . Thanks so much, Nicky, NRAS

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