advice needed please, for my 15 year old newly diagnosed.

[Northerner123]

My daughter has been diagnosed with RA & is taking it (undersandably) pretty badly. We are waiting a `emergency` referral to consultant after receiving blood test results confirming it all. I`ve had a great info pack from Arthritis Care, just wondering if there are any other parents on here who can offer advice! thank you.

[Hidden]

Hi - I'm so sorry to hear about your daughter - I have 15 and 16 year old sons and would be so distraught if either of them had RA so I can imagine what you are feeling. Since you mention Arthritis Care have you looked at their site yet arthritiscare.org.uk/Home? If you go to the box on the homepage that says "Discuss it on our forums" - click on this and then Scroll down you will find a heading "My Child has Arthritis" and below it a young person with arthritis's forum.

Although this is a wonderful place to come, the majority here are adults with RA whereas the AC site is much larger and has these forums for others in your and your daughter's situation. These would probably be the most helpful places where you could find others in the same boat as yourselves and help you to both come to terms with all that is currently happening plus give you specific info re Junior RA. Or use both - I do sometimes. Best of luck TTx

[Northerner123]

Thank you, yes, I have been on their site, I was just wondering whether there were any other parents of younger people with RA on here too.

thanks again tho!

[helixhelix]

Where's little_em when we need her? She's 18, so could give you a real insight into how it feels for a youngster, as well as being really inspiring for you as a parent as she's overcome loads so positively .... But check out some of her blogs as I think some others with JIA have contributed.

[little_em18 in reply to helixhelix]

Hello! I have written a comment below and hopefully I will be able to help! Its horrible to see other people around about my age going through what I have, so hopefully I might be able to give some advice and make people see that things do always get better, even though it can be hard to see at times x

[little_em18]

Hello! Im sorry to hear that your daughter has been diagnosed - its not a very nice feeling I know. Im 18 and have had arthritis since the age of 4 so I know exactly what your daughter is feeling. I still get very upset when I have to take my medicines and realise that I cant do other things that other people my age can. Just admitting that I have arthritis to people some times can be a big deal for me! I always try to keep smiling though To try and make myself feel a bit better, I always try and make sure that I have lots of nice things planned to look forward to no matter how big or small they are, just to keep me thinking about other things. So for example, its my sisters birthday soon so Ive been kept busy trying to find her birthday presents, Ive got an appointment booked next week to have my hair done, and Im meeting up with my friend next week - all things to keep my mind off all the bad stuff

Im a first year Multimedia Journalism student at University now and once I have finished my degree, it is my aim to set up a website and magazine with the skills I have learned from uni specifically for teenagers and young adults with arthritis. I want to help people like you and your daughter realise that there is light at the end of the tunnel

I have been on quite a few of the medicines, (e.g. steroids, methotrexate, and the majority of the Anti TNF therapy drugs) and have dealt with nearly every emotion (as well as side effects) you can think of that comes with having arthritis so if you or your daughter need anyone to talk with, feel free to give me a shout.

Keep smiling and tell your daughter from me that things will get better! Remember ... what doesnt kill you, only makes you stronger

Em

[Ella32]

Hi

I am 32, and have had Juvinile Arthritis since i was 13. Yes at times life has been horrible for me and my mum, and when you should be making decisions like " which dress to wear to the prom" etc you are making decsions like " Which mediction to take" or "which side effect is worse", but i have also lived, and at times loved my life. My life so far has included: 10 GCSE's, 3 A-levels, 2 degrees, a good working life (up to a point) and i have just recently got married to a wonderful man who has 2 beautiful little children who i love very much, one of them recently said that he felt having me as his step mum had made him grow into a better person due to my arthritis! My mum also has now begun to live her life, with a exciting new job and new friends, i'm not going to pretend it has been easy for her, or that even now she doesn't live every day in shock about the last 19 years or that she doesn;t worry about me each and every minute (i think that is kind of so for most mums anyway?), she also says that it has been hard to let me go out and have a life, to trust others to look after me, to even trust me to look after me. But everything thing good about me came from my mum, she was there to ecourage me to strive to be the very best version of myself and to not let this bloody desease stop me achieveing what i wanted. There is no doubt that this desease has at times worn us down until we were paper thin, but it has also taught us a lot, i guess it is just a challenge, and life has many of those! Also having said all this there are amazing new drugs being developed all the time and indeed the introduction of the Anti TNF's has changed the path for many arthritics including me. The Doctors just say 'i was born too soon' and that had these medictions been available to me then i might not have ended up with all these joint replacments, but they have made such a wonderful difference to me, and given me enough health to live.

Any questions you have i'm here and i'll try my best to answer them. Most of all what neither of you should loose is your hope

Ella xx

[Northerner123]

Many thanks to you all ! El has had a bad day today...I`m sure the `damp weather days` make her pains worse?! so another day off school...who I must say are being great with this. We are awaiting an appt `emergency refererral...11th April??!! So currently she`s taking umpteen painkillers & anti-inflammatorys which are making her very tired.

Well done you Ella with the exam results & your positive attitude, Ellie is managing to keep up at school , diagnosis still shocked her tho, I will get her to contact you if that`s ok...." Mums dont know it all" !!

thanks to everybody ! Emma. x