About this site

Why has this site been set up?

I have suffered with SC since the age of 18 but was not diagnosed until a 3 or 4 years later. Why so long? Because this disease is not common, many consultants in the UK do not understand it (a case in point, my sister was told she had it by her consultant “because your brother has” - SC IS NOT hereditary... and she doesn’t have it by the way)

So, without any clear picture from our own consultants what chance do we have? I stumbled across a forum on the internet where several people were discussing the disease. Finally! People I can talk to I thought... Wrong. The moderators on the forum were draconian and would not allow swapping of contact details, or any decent discussion on the subject, eventually they closed the thread. Fed up with this I decided to set up this site and associated forums so that people can talk to each other and get a better understanding of the disease. Of course, my reasons to a point are purely selfish, I am a sufferer too and am by no means an expert on it however it would be good to know that others can benefit at least a little from the experiences and information that are shared on this page.

So, have a look round, make yourself at home. Join the forums if you want, they will hopefully soon become a more valuable resource for all including myself. Most of all please bookmark this page and of course, if you do by any chance meet another sufferer then please do mention the page and make sure they get to come along for the ride too.

Graham

Graham’s personal pages are at http://www.grbrown.co.uk