Newby!

[DancerSinger]

Hey everyone! Newby alert! I am an adult JIA Warrior who is raising my daughter who is also a JIA Warrior. 22 months old, recently diagnosed last November at 16 months old. I was diagnosed at 18 months old (33 years ago). Hope everyone is well 🙏🏼

[KittyJ]

Hello and welcome to the group DancerSinger 😊

[DancerSinger in reply to KittyJ]

Ah thank you KittyJ. Hope you are well 😁

[KittyJ in reply to DancerSinger]

Thankyou, I hope you are too x

[DancerSinger in reply to KittyJ]

All good with us yes! Going to Addenbrookes hospital tomorrow to give my daughter her first injection of biologics. I'll be distracting her with lots of Hey Duggee I think! 😂

[KittyJ in reply to DancerSinger]

My hospital too, I hope it all goes well 🤞🏻 for you both

[DancerSinger in reply to KittyJ]

Ah thank you 😊😊

[springcross]

Hi DancerSinger, welcome to the forum. That is really tough - so young, I'm shocked. xx

[DancerSinger in reply to springcross]

Hi Springcross! Thank you! Yeah I don't think everyone realises how young children can be when they are diagnosed with JIA. Like I said I was diagnosed at 18 months old and then last November my daughter was diagnosed at 16 months. So I now have adult JIA I think (sometimes I get told its RA and other times I get told its Adult JIA) so yeah livesd with it for about 34 years! Do you have RA?

[springcross in reply to DancerSinger]

Yes, I do unfortunately and what a b----r it is! xx

[DancerSinger in reply to springcross]

It certainly is! You are an RA Warrior tho!

[nomoreheels]

Hiya DancerSinger, welcome. Such a pity your daughter was diagnosed so early, as you were. I would think you'll have many differences in treatment options for her from when you were diagnosed. I don't know if you're aware but NRAS have another HU site specifically for JIA Parents as well as a dedicated NRAS JIA site jia.org.uk/, healthunlocked.com/nras/pos... you may also find the NRAS site a helpful read too, nras.org.uk

I hope both you & your daughter are responding well & I hope you find it helpful being here.

[DancerSinger in reply to nomoreheels]

Hi nomoreheels. Yes it's a pain (literally) but at least I know what she's going through. Yes treatment is so much different these days and my daughters future definitely looks alot brighter! Yes I am also a member of the JIA group as well. I am greedy! Lol. Its so useful and interesting finding out other people's stories and situations. It's good that everyone can help and support each other!

[Hidden]

Hi,

Just want to welcome you both. That’s a pretty tough 33yrs you’ve had, and now a 18month old to run around after, 🙈🙈she’ll certainly keep you on your toes no need for exercise routines 🏃‍♀️stay well 🤗Xx

[DancerSinger in reply to Hidden]

Yeah it's been tough but I've managed to dance my way through it all as I am stubborn and won't let it beat me! Yeah she's nearly 23 months now and only started to walk using her walker (she also has JIA), she can't walk by herself yet so no running around after her yet. Although she can crawl like lightening! Haha! You stay well too! 😊

[Summerrain14]

Hi and welcome to this great forum DancerSinger! Goodness what a time of you have had! Wow 18 months old and diagnosed. She clearly has an amazing role model in you. x

[DancerSinger in reply to Summerrain14]

Aww thank you. Gotta stay positive and teach her that nothing will get in her way if she believes that enough. We just do the best we can ay! I still managed to dance through my JIA and sing professionally abroad so if I can try and pursue my dreams then so can she 😁

[Mmrr]

Welcome to you (and your daughter)

[DancerSinger in reply to Mmrr]

Thanks Mmrr! Hope you are well 😊

[Hessie5]

Welcome, - sorry to hear of little one's diagnosis -yet reading your post and comments I know she is going to be just fine, I could feel you see the rainbow 🌈 through the rain. Today we are blessed with the medication allowing us to live as good as healthy lives.

Sending you virtual blessings and alway have faith and remain hopeful. Life with RA is filled with a toolbox of ups and downs it's how we steer it. Hessie ☺️

[DancerSinger in reply to Hessie5]

Thank you Hessie. Yes the medication for my little one is so much better than it was when I was diagnosed 33 years ago so that's a massive positive. We have just come back from a 5 and a half round trip to her hospital. I've just had to give her first biologics injection. Yes you're absolutely right! Take care 😊

[Hessie5 in reply to DancerSinger]

5 hours to get to hospital wow - that's pretty unbelievable - I hope all went well for your little one. You need a nice cup of tea now and a treat of sorts - enjoy the rest of this beautiful day and weekend. Virtual hug 🤗 - Hessie

[DancerSinger in reply to Hessie5]

Well it was 3 hours travel and 2 hours at the hospital. Needed to be done tho! Thanks Hessie 😊

[Sheila_G]

Hi. Welcome to the group. I am so sorry to hear that. I didn't even know babies could have it so young. That is heartbreaking and so cruel. I can't bear the thought of a b s by suffering such pain. I do hope your daughter has a good response from biologics and is pain free soon. x

[DancerSinger in reply to Sheila_G]

Hi thanks Sheila. Yes I was diagnosed at 18 months old as well 33 years ago. So we both have it. At least I know what she's going through! We have literally just got back from a 5 and a half round trip to hospital where I gave her the first injection of biologics so hopefully once it kicks in she will feel much better 😊

[Hidden]

I am so sorry to hear about a baby of such a young age being diagnosed with this dreadful disease. It is bad enough for us to be in pain all the time, but to think of a little one like that who will be seeing her little friends running about, it doesn't bear thinking about. However, having you for a mother who has known what it is like to have it as a young child will be of great help to her and things will have already moved forward since you would found to have it.

Keep optimistic DancerSinger and I wish you and your little one all the best and lots of love. xxx

[DancerSinger in reply to Hidden]

Ah thanks Holly! Yeah it's not ideal obviously and we've been told we are quite a rare case to both have it but yes I know exactly what she's going through and the medication and treatment now is so much better than it was 33 years ago! Thank you. Yes we are a positive household and we will continue to teach her that she can do whatever she wants to do in life no matter what she faces. She will definitely be resilient and will be able to overcome whatever barriers are put in her way. She is our little JIA Warrior 😊 x

[BonnieG123]

Warm welcomes, DancerSinger!

[DancerSinger in reply to BonnieG123]

Thanks Bonnie! Hope you are well 😊