I was told when I was first diagnosed that this condition was "rare".

I was informed that the Neurosurgeon that treated me generally treated about 3 people a year with ACM & SM.

Since then I have seen many different statistics banded about on various websites and in leaflets from various sources. These statistics more often than not contradict each other. The most common statistic to come from the USA is 1 in every 1000 people have been diagnosed.

If we look at the current population of the UK being 6.14 million, then there could be as many as 61400 Chiarians in the UK.

Possibly there could be more if that is actually diagnosed cases? With the mess surrounding diagnosis, who knows where that figure could be?

My own experience would suggest that it is a lot less "rare" than we think and with the prevalence of easier access to MRI scanning over recent years, this disease is being picked up on a more regular basis.

The issue that it is "often diagnosed" and patients can go for years being diagnosed with other ailments, or just getting on with life thinking it's just the sign that we are getting old can easily skew these statistic further.

The strange thing to experience though, is when you do a little self research, join forums and talk to other people, that this may not be as "rare" as we may first think.

Many Chiarians can go for most of their life without suffering any symptoms at all. ACM is congenital in the main, therefore I certainly went nearly 40 years without the need for further investigation. it therefore is quite possible that someone could be asymptomatic for all of their life.

All I hope is that it is not "definitely" hereditary, although there are suggestions to the contrary. I have 2 children and would hate for them to be destined to go through what I have and continue to do like so many others are today.