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

Types of Avm's Facial AVM
1

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

2

You must contact http://www.avmsurvivors.org/profile/ChantelleRebeccaRichardson426 Chantelle Richardson, who was on the channel 4 documentary not long ago, the series 'Katie: My Beautiful Friends'

3

George,
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.

4

Thanks Trish i will give this a go :)

5

Thanks Rich :)

6

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.

7

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