While it has taken 23 yrs. to get the media's attention, I am thrilled my story has been published in the local, smalltown paper! There's minimal 'errors,' but nothing worth pointing attention to. What's important is to help spread the word and make a difference! Hooray!!!
To those who don't already know, cavernous malformations, CM's are in the same vascular malformation 'family' as the AVM.
Yes, there does need to be more info out there, especially for the newly diagnosed and for those living far away from great specialists who can properly advise on the best treatment.
Big thumbs up Patti! Maybe some day our vascular malformations will no longer be met with odd confused looks when they are brought up. I still have yet to meet someone outside of the AVM/nuero community who knows what an AVM or CM is let alone what those letter mean to the patients that have them.
Yes, and the more 'unawareness' I find in the community, the more I want to bring attention to CM's and AVM's. My local neurologist claims he's seen about 10 of 'us' in the past 8 mos., yet I shudder to know what recommendations they were given.