There are 45,000 TN sufferers in the US and 900,000 worldwide - so many people that could use some support. If you know of any bulletin boards, forums, blogs that would be a good place to post a link to our small but growing community, please post here. Thanks.
Wow, that’s a huge number of people. I’d be happy to be part of the reach out effort.
Actually it already is on the NORD page you just have to look hard for it. When i was first diagnosed that was one of maybe 3 websites that even had articles on TN…although maybe they have since been removed I dunno.
TN is extremely rare actually. You have to consider the fact that for example there are over 300 million people in the US…but only 45,000 cases diagnosed. There are less than a million cases diagnosed world wide yet there are BILLIONS of people world wide. Factor in people with atypical TN and etc like me and its even rarer.
Hi Ben,
Searching through old posts, I found the info above-45,000 TN Sufferers in the U.S.. 11/14/2008. Any idea of the numbers today.
If they included all facial pain sufferers the number would be much higher. And if people could get accurate diagnosis, the number would probably be even higher. I always knew I was special and would be one of a million, but I was kind of hoping that meant I would win the lottery. 
I'm from the UK too and very glad I found this group. I'm lucky to have a supportive partner and a very good friend I can chat away to about the condition but it somehow helps to know that I'm not the only one going through the pain. Not that I would never wish it on anyone else!
And crystalv is spot on - we got the numbers wrong on our lottery tickets. I've always wondered what I would do if I won a crazy amount of money on the lottery - always wondered what on earth you could do with all the money. But I know what I would do now, I would keep enough to see me through and then give the rest to research TN.