NRAS
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my 15yr old daughter

hi my 15yr old daughter was diagnosed last year with JIA (ERA)arthritis of the spine apparently it's a 55yr old plus they also noticed shes got scoliosis of the L4 par verabre . since being diagnosed with that she's also been diagnosed with Fibromyalgia (RA) & has had quite a few wot they call an unresponsive episodes ,were her body fully shuts down . My daughter had perfect eye sight in up until end of September 2016 .Thats when she had her first bad shut down she only went upstairs to get changed out of her school uniform before tea I was just seeing my oldest daughter & her friends out when all of a sudden we heard Chloe screaming ; shouting for me so we all ran back in her 1 of her baby bothers was already up the stairs with her he even had a bowl they was just outside my daughters bedroom door which is at the top of the stairs .All she kept saying is she couldnt see but her eyes was open as I can upstairs she kept saying I carnt see mum I my other daughter helped me get her down the stairs as we got to the bottom my daughters eyes were shut so we sat at the bottom then hrr speach went slurrey as we tried to get her up to move her het body just went limbo she couldnt move

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☎️ NRAS Freephone Helpline: 0800 298 7650

📧 NRAS Email: helpline@NRAS.org.uk

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In calmer moments: JIA Parents forum may be a useful resource, lisa0808: healthunlocked.com/jia 😌 🙏

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I am not going to like your post as it is too distressing. I am so sorry for your daughter and your family. I pray that she has something that will help her through these episodes.xxxx

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How gut wretching and very upsetting. Sending my love and please keep us informed.

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This is so distressing for you all, such a young age to.

Philip.

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I'm so sorry to read this. I do hope your daughter has recovered from this episode & doing better? I'm a bit concerned as your post ends abruptly on such a negative note, how is she now?

I don't know if you're aware but the NRAS has a dedicated website for JIA jia.org.uk & a dedicated freephone helpline 0845 458 3969. There's also another Healthunlocked forum for parents & carers of children with JIA healthunlocked.com/jia/about, they may be able to answer any pertinent questions you have currently.

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Dear Lisa, as other have kindly shared, please get in touch and have a look on our website, there is lots of useful information and we could also perhaps put you in touch with someone in a similar situation to talk with

BW

Anne

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