How many people on this website, actually have a Facial AVM ? How rare are we?

I was just thinking as to actually how rare cranofacial AVMs are in comparison to intracranial AVMs , I live in the UK and am struggling to find more than a few . George

You must contact Chantelle Richardson, who was on the channel 4 documentary not long ago, the series 'Katie: My Beautiful Friends'

Go to the member tab on top of the page. Go to search. Go to advanced search. Scroll down to location and type in face. Click search. You will see a list of all members with facial AVMs.

Thanks Trish i will give this a go :)

Thanks Rich :)

Hi, George, there are at least 115 facial AVMers on this website, and I know a few more who aren't members. Also, 43 spinals, 67 trunk and internal organs, 47 arm/hand, 79 leg/foot, and 30 who have multiple extracranial AVMs.

Thanks Dancermom :slight_smile: that’s definately confirmed to me how rare facial AVMers are ! I’m really glad your son is doing well . My Nikki is as you know due to the nature of her AVM being treated by embolization , that will hopefully keep the beast at bay until a better treatment comes along . We are starting a charity that will hopefully raise funds for specific research into AVMs that is sadly lacking at the moment .George x