Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Why so few members - are we strange?

Hi,

If 1 in 200 people have AS why does a site like this have so few members (around 6000 according to the front page)?

As soon as I was diagnosed I spent ages on the internet finding out as much as possible, but why do so few other people feel the need to join a community like this?

There could be a lot of lurkers but it still seems low.

Jon

wow 1 in 200? I heard it was more like 1 in 50,000. So I was tickled pink to find so many people on here . . . and you also have to take into consideration the language thing - everyone here speaks English, so we mostly have Americans, Canadians, Aussies and crumpet munchers. I LOOOOOVVVE you guys . . .
I really thought we were closer to 1/50,000. i'm gonna have to look it up again.
htbl,
Bridget

1 in 200 does seem high...gonna check that out. Wow!

Hi Bridget,

I was a bit off. According to wikipedia 0.25% of the population have AS with three times as many men.
So that's about 0.375% of men and 0.125% of women.

According to another website there are about 500,000,000 english speaking users of the internet. That is about 1,250,000 with AS.

Most will not be diagnosed but even if only 5% are, there would be 62,500 possible members (with AS).

I wish I hadn't raised this now!

Jon

Hi Jon,
Dont worry it makes life interesting. It does sound a lot but when you take into account all the other sites for AS and the fact a lot of people probably dont join web sites your figures are probably about right.

Kevin

Everyone I meet with AS has never heard of KA. I am sure to let them know about it

My Rheumy said he has 50 patients with AS and yet only myself shows up on the map for all of Idaho, USA. I'm like you, I went straight to the internet to find out all the info on this AS beast I could!

All the people I've talked to are relying only on what their doc tells them.

I don't know about you all, but finding KA has been the BEST thing I have done wrt this disease!!! And of course prayer.

Take Care all.
-Donette

Its the screening committee. They only let the finest of AKikcers in. I had to pay a guy to slip in the back door.

Steve..you are SO funny..lol

I happen to know that AS'ers are highly intelligent anyone that can spell Ankylosing Spondylitis and say it has to be smart.

I use to get so tired of telling people Anky WHAT??? I was like never mind it's an immune disorder.

When you talk about paying the guy to slip in it was Alan wasn't it, he tried that all new cheap move with me but it didn't work..lol

Lisa

what shocks me is how many men are on this forum! It has to take something special for a guy to be committed to an online forum! you know.. the whole 'communication' thing ..... is not a strong point...... er.... umm... never mind.... I'll shut up now!

BLAH, HA, HA...this is true but I do know some men here that positively are in touch with their feminine side..lol (jabby and comunicative)

Lisa