> The Beesley Buzz: It's Friday...the worst day of the week.

It's Friday...the worst day of the week.

It's Friday today. My instagram, twitter and facebook feeds all tell me I should be celebrating. "Friyay! The end of the week, weekend is on it's way" and all that.

But despite Friday signalling fish and chip day at school, the end of a long and tiring week and, as in today's case, the end of term, Miss T HATES Fridays. She counts down the days from Monday with dread as we approach Friday.

However much we try to focus on all the good stuff about Friday, she knows Friday is injection day and she hates it. Yesterday marked the 2-year anniversary of her official diagnosis of Juvenile Idiopathic Arthritis or JIA for short.

She was two years old at the time of diagnosis and she is one of the lucky ones. It was only 3 months between us first noticing her symptoms and her formal diagnosis.

And prompt diagnosis means that treatment can start quickly. Getting prompt treatment for JIA is so important for preventing the long-term irreversible joint damage from occuring and a lifetime of pain.

I know all this because I too have JIA. I was 10 at the time of diagnosis but in my case it took a whole year of being in unbearable pain, a whole series of tests and hospital stays and even a hip biopsy and only then, by process of elimination, my condition was diagnosed as being JIA. By then the joint damage was done and now it affects me every single day of my life.

The diagnosis of JIA remains one that occurs by process of elimination. So that hasn't changed in the past 30 years. The other thing we discovered is that awareness and attitudes have also changed little over all these years.

One of the most common things that I used to hear was the shock and surprise when people asked me what was wrong with me. Because they believed that "arthritis is an old persons disease".

When people hear of Miss T's diagnosis, they are shocked to hear that a child could get arthritis at the age of 2.

We cannot fault the wonderful care and treatment that Miss T has received but I know from JIA related activties that I have been involved in that even amongst the medical profession Arthritis is often not considered as the potential cause when GP's are faced with a child with unexplained joint pain.

This needs to change. People need to know that it is possible for a child to get arthritis. The first step is awareness.

That is what I love about the #wearpurpleforjia campaign. It is all about raising awareness of JIA.

Children can and do get arthritis. Whilst not enough is known about the condition to prevent it or 'cure' it, we can all play a part in raising awareness to help ensure it is recognised in the first place.

These days treatment is available. For me, I don't think the treatment options were there at the time I was diagnosed, so even a quicker diagnosis may not have made a great deal of difference all those years ago. But now it does.

Our friends at Cup of Tee got in touch to offer me and Miss T their awesome ethically made purple T-shirts that arrived packaged beautifully in a reusable Tea Cup.  So kind of them to support us in raising awareness for JIA.

JIA at NRAS have got all the info you need to join in with #wearpurpleforJIA They even have a fundraising pack you can request. As someone who already supports various charities close to my heart, what I most love about the campaign is that it is more about raising awareness than raising funds. I know that everyone has charities close to them that they support financially and so I never like to ask people for donations. Hence the primary purpose of this is awareness raising. Of course,  any donations that are received are welcomed and will be put towards the work of the NRAS (National Rheumatoid Arthritis Association).

We've recently updated our blog with a page dedicated to information about JIA and our experience of it, tips that have helped us along the way and some downloadable resources like medication monitoring charts as we found that keeping track of all the medications that Miss T was on could prove extremely tricky at times!

You can find it here. Please do bear in mind that this is not to be considered as medical information, but rather our experiences which may be of use to others. It is focused around Methotrexate (MTX) as the main treatment drug as that has been our case but there are various other treatments available for children where MTX does not prove effective or where something else may be considered more suitable in their particular case.

So back to the topic of Fridays. Wear Purple for JIA day is on FRIDAY 9th JUNE 2017. And that is one Friday that we are definitely looking forward to!












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