Anyone know if there's a source of information about RA for children?

[cathie]

my grandson is 6+ and he doesn't understand why I can't do things. It's affected our relationship. I'll blog about it sometime. His mother, my daughter has at long last started trying to explain to him. Has anyone ever seen any material which could help?

[LavendarLady]

Hi Cathie, Try the NRAS website - they have some very good booklets and one I think is for the family which explains in quite easy terms what RA is all about and how it affects people. My grand daughter who is 6 1/2 knows I have it so does her other grandmother who was diagnosed many more years ago than me. So when I tell her I can't do as much as I would like (like running round the garden playing hide and seek) she is very sympathetic and asks if my joints are hurting! She will sit and stroke my hands if I tell her the fingers are painful or ask if I have a headache! Not quite sure of the connection there though. Anyway, good luck with your search. LavendarLady x

[Mel_]

Good afternoon Cathie.

My son is 5 years old next weekend and for the last year I've had a hellish time with him all due to RA. I had always tried to explain to him why I could sometimes not do things. Daddy has always had to be the one for phyiscal play and I'm on hand for lots of love and matters of the brain - homework etc. He is a bright boy (well I would say that) and when it came down to it I think we were not actually giving him enough credit and giving him enough information. Don't be scared of a bit of honesty, it's amazing how much they can take on board. I'm going to write a blog about it so have a look at that later on. Regards Mel x

[cathie]

Thankyou both, I'll look properly at the NRAS website - you're right there's probably something there.

I suppose my problem now is to do with my grandson's reluctance to hear / listen to anything. And maybe my daughter is afraid to face up to what I've got. She rarely asks me about it and I suspect this is to do with the strong hereditary element of RA in our family. Difficult. But I'm seeing a counsellor (about something else really) and I think this is somethiing we could explore. I will share any wisdom should it emerge!

Cathie

[LavendarLady]

Hi Cathie, a good idea to chat over with the counsellor. It may be your daughter is very fearful that she may get RA as she gets older, particularly as it seems to run in your family. You could get her one of the NRAS booklets as well which explains about RA - it might also reassure her. good luck. LavendarLady x

[Victoria-NRAS Partner Moderator NRAS]

Hi all

I work on the NRAS helpline, and I have emailed this to Cathy, but thought that I would post it on here as well, in case this is useful for anyone else.

This is something that people often ask about, and it can be very hard to find information for children, because at different ages they are ready for completely different levels of information. I think that for a 6 year old you are absolutely right that finding something that explains juvenile arthritis is probably the closest to what you are looking for. One of the best examples we’ve found for younger children is:

arthritisresearchuk.org/art...

On this page you will see a link to a booklet called ‘Tim Has Arthritis’. This is aimed at children with juvenile arthritis, but in some ways is nice as it can encourage the child to see things from their own point of view, which may help them to understand that you want to still be doing these things with him, but your arthritis is stopping you.

The following article may help you as well. This is from a website that someone in the US put together. The person that created the site calls himself ‘Rheumatoid Arthritis Guy’ and has created a superhero persona for himself. This page of his site is about parenting and RA, but I think that the way he uses cartoon images to explain his condition, especially with the ‘superhero’ element is quite a nice way of explaining things, so you might find other pages of his site good for this purpose as well:

rheumatoidarthritisguy.com/...

I hope these links will be useful to anyone that needs them.

Kind regards

Vicky

NRAS Helpline

[cathie]

Vicky - thankyou so much, that's really useful.

I love rheumatoidarthritisguy, even though I'd resist being identified by this disease. ITs very positive and feisty.

Thanks again,

Cathie

[Victoria-NRAS Partner Moderator NRAS]

Not a problem Cathy. I have also just found another link which gives some advice on how to approach the subject, and might be of interest: everydayhealth.com/rheumato...

Kind regards

Vicky

[Hidden]

Hi Vicky

I do wonder why questions are answered by NRAS on here but so many questions on the NRAS forum are not. Very often, posts on the forum are asking for advice, and we often point people in the direction of the Helpline. To my knowledge, I have never seen as reply on there. I really do think this would be very helpful, as some of the members struggle terribly.

Jean