have never written on here before...: hey, i have been... - NRAS

NRAS

36,573 members45,179 posts

have never written on here before...

clairereay profile image
8 Replies

hey, i have been reading other peoples blogs for about a year now, and i think its time i told you about my daughter,she is just 15 and has suffered r.a all her life but was diagnosed at the age of 6......she has had several drainage's on both knees and ankles and has r.a in knees ankles toes fingers and jaw. she is on methotrexate sub cut and she injects it herself and has been doing that since age 13.... next yr she will have an upper and lower mandibular osteotomy and and a new chin.....she never ever moans really but i can read her like a book.... and its heartbreaking to watch her try to be "normal" she has all this to cope with as well as gcse and puberty....is anyone else having or has had that operation? or anyone else out there young like her?

Written by
clairereay profile image
clairereay
To view profiles and participate in discussions please or .
Read more about...
8 Replies

Just wanted to say "Hi", it must be so tough for both of you to experience this horrible disease at such a young age. As you say heartbreaking for you as a mum to walk with her & watch her struggle when other teenagers are able to do so much more. Gentle hugs to both of you

Pauline

sylvi profile image
sylvi

Claire, welcome, i don't know if this will help,we have a young lady of 18-19 called littleem. Read her blogs as she is of a age near to your daughter. It is hard work being a mother lket alone a mother to a daughter with ra. I know you can read her like a book my daughter does the same,she always know when i'm not up to much. You do the best you can to support her and she is lucky in having you as a mother.

I am sending my love and support to you both.

Sylvi.xx

Yes ditto to what Pauline said. I have three teenage sons and a few health worries about them so I can imagine how awful it must be to watch your daughter suffering from this disease of ours.

I don't know anything about the operation you are speaking of and don't recollect anyone on here having such an op since I've been around but that isn't so very long really - only about a year - so hopefully someone will come on who can tell you more.

Just a thought though- there have been other mothers come on here with children around the same age as your daughter but they are infrequent bloggers so I wondered if you have tried the Arthritis Care site as it has a whole forum for parents of children with all kinds of arthritic diseases, mostly JRA I think? arthritiscare.org.uk/Public... You might find more specific support from this forum but you can always come here too - the NRAS helpline is really good too if you need information or help of any kind. Tilda x

codliver profile image
codliver

Hi Claire,im a new blogger too and have been made to feel welcome on here. Sometimes just a couple of kind words makes all the difference when youre having a crappy day. I think your daughter is amazingly brave battling this thing at her age along with all the usual teenage stuff and what a great support you must be to her.I dont have any knowledge of the operation you mentioned as im new to all this but just wanted to welcome you.xx

helixhelix profile image
helixhelix

What a worry for you. I can't really imagine how difficult it must be watching your daughter suffer, but probably as bad as having RA so very sorry for you as well as your daughter. If you've been reading the blogs I hope that you've read ones from little_em , she's a couple of years older than your daugher but I think she's amazingly inspirational...So do a search if you haven't looked at them. Take care. Polly

roger-s profile image
roger-s

so sad. my cousin has had ra from the age of 14 she is now 38 and works full time in a office. she has had lots of diffident operations, but i don`t think she has had the one your daughter is having. she seems to cope better than me, i was 35 manual worker and doing sport, so i miss all that. i wish you both the best

Your daughter sounds so brave, send her my best wishes x

SarahKate-NRAS profile image
SarahKate-NRAS

Hi Clairereay

As others have said, your daughter sounds as if she's been incredibly brave with such a lot to cope with. Here at NRAS we are currently developing a section to help those with juvenile forms of arthritis and their families, but it is still in it's early stages. In the meantime, as TildaT mentioned Arthritis Care have a dedicated helpline and section on their website for young people with arthritis, and there is another organisation we are aware of called the Children Chronic Arthritis Association: ccaa.org.uk/

I wish you both well and I hope the operation goes smoothly.

Kind regards

Sarah Kate

NRAS Helpline

You may also like...

Hip pain like I've never experienced before!!

going up is a different matter. I feel like a horse has kicked me in both buttocks! Right side is...

Steroid in knee has made it worse!? Never happened before...

Just wondered if anyone else has had this happen. I have had countless knee jabs, that have always...

I haven't written here in a good log time. I have just been so unhappy, of course nobody know it. I am on so many meds and not feeling good!

I am taking methotrexate injections weekly, plaquenil , folic acid two different things for my...

Having a great day 😃😃😃😃😃 never thought it could happen with RA

Feeling sorry for myself! Having a flare up, am on methotrexate and sulphasalazine. Not Able to contact rheumy dept, GP written but no

left knee swelling up again (only 6 weeks since it was drained and steroid injection), other knee...