[Editors note, I would like to thank Jess in advance for writing this superb guest post for MyLungsMyLife. I have been following Imogen’s journey on Facebook and I really can’t describe how much of an inspiration Imogen is. It is an honour to share her story.]
My name is Jess. My daughter Imogen has Polyarticular Juvenile Idiopathic Arthritis. She was diagnosed in February this year, after 3 of her joints swelled up. We were extremely lucky in the fact that we were diagnosed quickly. Although Imogen had probably had it for months before we saw the signs. Imogen was diagnosed just before her third birthday.
Since diagnosis we have endured many hospital visits and numerous treatments including:
– IV & Oral Steroids – great for a quick “fix” but horrific side effects (temper tantrums, not sleeping, behavior difficulties)
– Methotrexate – Weekly injection of a chemotherapy drug
– Joint Injections under General Anaesthetic – (We’ve done 3 lots. Last time she had over 20 injections)
– Anti Inflammatories by the bucket load (Ibuprofen, then moving onto Naproxen)
– Physio and Hydrotherapy – (Imogen hated Hydro, but loves her Physiotherapist)
We are now waiting on a new medication called Enbrel which we are hoping will give some long term relief to Imogen and her poorly joints.
Throughout all of this Imogen remains a happy, smily, carefree child. She never complains that she is in pain, never complains about spending time in hospital and tries as hard as she can to just carry on.
At the moment she has about 15 joints that are active, even after steroid injections into the joints.
I feel that there is not enough support out there for parents with children who have arthritis. I remember feeling so alone when Imogen was first diagnosed as I didn’t know anyone else whose child had it. Although after a lot of google searches I found a few places to vent my frustrations!
I have now set up a website http://imogensarthritisjour.wix.com/ourarthritisjourney and also a forum
http://ourarthritisjourney.proboards.com/ so that there is a place for parents and the young sufferers themselves to come and discuss their experiences and reach out for support if they need it.
Arthritis has changed our lives now, and it’s hard to go forwards not knowing what the future holds for my daughter, but there is one thing that I am totally sure of. Imogen will not have less of a life in any way shape or form. Yes it may be different from her friends, but her father and I will make sure she misses out on none of the childhood memories that need to be experienced! She has already done sports day this year and also her first Christmas play!
I often say to people that my daughter is my hero. To go on smiling when she must be in so much pain, it’s unbelieveable, yet she does it daily.
So yes my daughter has arthritis, but the arthritis certainly does not have her! 🙂