I currently have 5 friends awaiting surgery over the next 5 days. They all belong to a forum / message board / community that I found just before I had surgery in April 2009.

The support that they are currently giving to each other and receiving from everyone else is totally amazing. These people are literally being empowered and driven to be positive from that support. The same that I was given as soon as I joined the forum. I am not sure that I could have coped without it.

Ok, so forums are not everyone's cup of tea - talking to strangers on the internet has always had a bit of a stigma attached to it in peoples minds, especially truthful with some generations. Not all, so I am not generalising, as the Chiari Forum that I joined is made up of all age groups and backgrounds. But it is true to a large extent.

There are people that join up and just take the time to read through the various posts - and not post anything themselves and that's ok too, each to their own and as long as they find the information helpful, then the forum has achieved one of its goals. Much the same as this blog to be honest.

I fell foul of finding lots of negative information when I was first diagnosed and Googled the terms that I had been given - I spent weeks and months scaring myself whitless reading horror stories from the USA, and trying to understand their medical terminology and set up. All of that research in my opinion was wasted and set me back a long way. It was more negative than positive. I know for a fact that lots of people do this too and have scared themselves half to death in the process.

There are a number of reasons for this:

1. Your Neurosurgeon appointment is short on time. You will not ask all the questions that you need to ask nor will you remember the answers.
2. There is not a lot of general information available to be given to the patient in written form.
3. Everyones Chiari / Syringomyelia is different in severity, presentation of symptoms or just generally.
4. GP's do not generally have any experience with Chiari malformation.
5. Patients are often mis-diagnosed or given the wrong information by other medical professionals that they are referred to.
6. There are no organised support groups within the UK.
7. NHS Choices / NHS Direct do not currently list any information with regards to Chiari Malformation. (This is set to change in the new year)
8. There is much more widely available information in the USA, however much of it is of a personal nature and dramatic.
9. It is a "rare" condition in general terms, however it really is not as rare as we think - it is reported that 1 in 1000 people suffer with Chiari malformation in the USA, meaning that there are potentially 64,000 people in the UK currently suffering from it whether they have been diagnosed or not.
10. The only UK Charity is a paid member site before you get information.

The list is never ending............

This year, lots has been done about raising awareness of Chiari through all quarters, both public and medical, it has been a great year so far with more to come next year - but this has only been achieved through the hard work of certain private individuals. Dedication to improving someone else's experience because our own has been so poor.

Some examples of this are:

http://www.chiari.co.uk the forum that I belong to has helped hundreds of people this year alone get in contact with other people in the same position offering advice and support in abundance and creating new real friendships. Run by James and his wife Diane.

http://www.chiari.org is a website and forum written by another Chiarian for her University degree but which contains lots of very thoughtful and helpful information. Run by Alison.

http://zipperheadsuk.blogspot.com a website published by a young guy with Chiari and SM that truly writes from the heart. And he has a heart of gold as he struggles on with his own troubles and life hurdles. Run by Darren.

Laura Hickman is a young welsh lass who has made brilliant inroads into raising awareness through her involvement with Antony Gormley's 4th Plinth art project earlier this year. She has also launched a government petition which is currently going really well! She has affiliated herself with an American Charity trying to raise funds in the UK. She has helped hundreds of people find support and information through her use of social media.

The Walton Centre for Neurology in Liverpool run meetings every few months which are absolutely brilliant. As far as I know, they are the only ones in the UK to do so. They are attended by patients with Chiari and / or Syringomyelia and are not the stereotypical tree hugging meetings. I attended one a few months ago and thoroughly enjoyed it. Read more about that here.

The above are just a few that spring to mind, but each one offers great information and lots of support for those looking for help or answers. Much like my own, born from a passion to help others avoid the pitfalls that we all fell into on our own journey - and still do.

If you can think of other ways that you would be able to offer support, then please give us a shout. If you are looking for some other way other than on-line, then also please give us a shout, someone might be able to help you out in your own area.

If you are currently trying to set up your own blog / website or support meeting, then also please give us a shout.
Anything that we can do to give help / support or raise awareness would be welcomed and considered.