- My daughter Imogen was diagnosed with Polyarticular Juvenile Idiopathic Arthritis in Feb this year. She wasn't even three years old.I remember feeling so alone after diagnosis. I didn't know anyone else who had a child with this disease and we were literally just given a diagnosis and shoved out of the door by the local hospital. One of the first things I did when we were settled at home was Google, to see if there was anything out there for parents with children who have arthritis and other than places who gave lots of information, there wasn't much where I could discuss things with other people going through the same things.I have talked to a few arthritis parents since and everyone has said the same. There are no real places to go to talk to others in the same situation.So the idea of Our Arthritis Journey was born. I believe there is a real need for somewhere to share our experiences, get advice and support if we need it, and also somewhere for the younger sufferers to have somewhere to chat and talk to others like themselves.I have been on many forums throughout my life dealing with many different things. I decided that having a forum would be a good place to start. That way people could join, see that they weren't alone and that there were many other people going through the same thing.The forum opened yesterday (16.12.13) and we have 5 members so far. Eventually I would love this to expand and be a great community for people to come and discuss anything, from the weather where they are, to the next step in treatments for their child. Also it doesn't just have to be for parents, it can be for grandparents, aunts, uncles, siblings or anyone else affected by the bombshell that is JIA. Because the one thing we all know is that JIA does not just affect the child, it has a knock on effect for the whole family.
Tuesday 17 December 2013
I'm Sorry
I've neglected the blog :(
Imogen had over 20 joint injections on Monday 9th at Great Ormond Street Hospital. That was her third lot.
We are waiting for an enbrel referral so hopefully that will happen soon and we will get an idea of when that will be started. They have also upped her MTX to 12mg. Sadly Enbrel is another injection, so not much fun for poor moos!!
However she is still smiling, had a speaking part in her xmas play (extremely proud parents moment) and all in all she is doing ok.
I'm still spending time doing a lot of calling around to hospitals to chase things up which is annoying!
Edited to add: We have a website and a forum now too
http://imogensarthritisjour.wix.com/ourarthritisjourney
http://ourarthritisjourney.proboards.com/
xx
Imogen had over 20 joint injections on Monday 9th at Great Ormond Street Hospital. That was her third lot.
We are waiting for an enbrel referral so hopefully that will happen soon and we will get an idea of when that will be started. They have also upped her MTX to 12mg. Sadly Enbrel is another injection, so not much fun for poor moos!!
However she is still smiling, had a speaking part in her xmas play (extremely proud parents moment) and all in all she is doing ok.
I'm still spending time doing a lot of calling around to hospitals to chase things up which is annoying!
Edited to add: We have a website and a forum now too
http://imogensarthritisjour.wix.com/ourarthritisjourney
http://ourarthritisjourney.proboards.com/
xx
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