Comments on: Coffee Stains: O Brother, Where Art Thou? http://vergil66.com/blog/2008/12/10/coffee-stains-o-brother-where-art-thou/ Pull up a chair and chat a bit Fri, 19 Mar 2010 23:14:32 +0000 http://wordpress.org/?v=2.7.1 hourly 1 By: Vergil http://vergil66.com/blog/2008/12/10/coffee-stains-o-brother-where-art-thou/comment-page-1/#comment-737 Vergil Sat, 13 Dec 2008 02:12:03 +0000 http://vergil66.com/blog/?p=401#comment-737 Ian, Thanks for the post and you're correct: I didn't know about Cavernous Angioma and like most people, you don't realize it until you or a family member has it. And I think that was my point in the post: that there wasn't a lot of information about it and the educational element of the condition seemed to be lacking here in the States. Thanks for the response. Good Luck, Chris Ian,
Thanks for the post and you’re correct: I didn’t know about Cavernous Angioma and like most people, you don’t realize it until you or a family member has it. And I think that was my point in the post: that there wasn’t a lot of information about it and the educational element of the condition seemed to be lacking here in the States.
Thanks for the response.
Good Luck,
Chris

]]> By: Ian Stuart http://vergil66.com/blog/2008/12/10/coffee-stains-o-brother-where-art-thou/comment-page-1/#comment-736 Ian Stuart Thu, 11 Dec 2008 20:32:39 +0000 http://vergil66.com/blog/?p=401#comment-736 Hello, Please be informed that whilst I cannot speak for Angioma Alliance, our parent organisation, I can speak for Angioma Alliance UK as its co-ordinator. (We are shortly to be called Cavernoma Alliance UK.) Cavernous Angioma are NOT rare. The European bench-mark for rare conditions is anywhere between 1 in 2000 people affected by a condition and 1 in 10,000. We have a journal here which has done a survey of asympyomatic people not presenting with any problems - 1 in 680 had a cavernoma - and I think the rate is greater in the US, somewhere between 1 in 200 - 300. The reason you may not have heard of cavernous angiomas is that they only came on the scene in the 1980's as a result of MRI's. Best wishes - and do email with any thoughts. Ian. Hello,

Please be informed that whilst I cannot speak for Angioma Alliance, our parent organisation, I can speak for Angioma Alliance UK as its co-ordinator. (We are shortly to be called Cavernoma Alliance UK.)
Cavernous Angioma are NOT rare. The European bench-mark for rare conditions is anywhere between 1 in 2000 people affected by a condition and 1 in 10,000. We have a journal here which has done a survey of asympyomatic people not presenting with any problems - 1 in 680 had a cavernoma - and I think the rate is greater in the US, somewhere between 1 in 200 - 300. The reason you may not have heard of cavernous angiomas is that they only came on the scene in the 1980’s as a result of MRI’s.

Best wishes - and do email with any thoughts.

Ian.

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