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

Ah, 1 in 100 have rheumatoid, which would be about 1% of the population of Canada. About .3% have AS.

However, if only between .25% and 1.25% of the world's population have it, you might not see people who have AS every day. Depends where you live, I'd guess. Granted, if the people who have AS really do tend to be in the northern and southern hemispheres, with very little around the equator, that narrows the odds of meeting someone on the street who has AS. I have done that, actually. It's pretty easy to spot in some men and over the past 8 years, I'd estimate I've met/seen probably 10 people with AS, as I go through my work day. And you might not recognize if someone has AS. So many of us show no visible physical signs.

Warm hugs,

Hi,
Just by googling aka ankylosing spondylitis I am able to find several synonyms(?) to ankylosing spondylitis. My guess is that people may be diagnosed with the alternate name, and not even know that there are support forums for their disease.

Also, there are those people who have been mis-diagnosed as well.

Then we have to consider how many of those people with AS have access to the internet. Possibly 1 in 5? Odds would be much less in poorer areas(countries).

Kev somone needs to stand up for us.
ETTE
Mulehound

Wendy,
The mens forum is a very private place were only inteligent males are allowed to discuss the finer points in life and ponder over what should be done with nosey sarcastic women.
Theres no point in letting women in they wouldnt be able to understand the conversations that are had in there.Its best you stick to your girly forum talking about babys and handbags.

Kevin

I've never been in the men's forum.
It's because I never had a reason to go in there.
Not because I value the women's input more.





I was only kidding!

Take care,
James

"Strange" may not be the appropriate word..."rare" as in rare gems and rare coins is more fitting description of our true value. Actually in the U.S., AS in considered a "rare disease" by Ntl Inst of Health. Here's the definition they use:
A rare (or orphan) disease is generally considered to have a prevalence of fewer than 200,000 affected individuals in the United States. Certain diseases with 200,000 or more affected individuals may be included in this list if certain subpopulations of people who have the disease are equal to the prevalence standard for rare diseases.
http://rarediseases.info.nih.gov/Resources/Rare_Diseases_Information.aspx

Also, National Organization For Rare Disorders http://www.rarediseases.org/ has good resources. They are even recruiting us "rare" ASers for a clinical trial:
http://www.rarediseases.org/research/clinicaltrials

So no, we are not strange, just rare...and you can celebrate your rareness on 2/28/10
Rare Disease Day
http://rarediseaseday.us/about/celebrate/
So go kick up your heels

Those of us with 2 or more "rare disorders" plan to party all night.

James - you totally cracked me up with that post!!! LOL

Thanks for the giggle!

Oh my...this post is going downhill real fast..lol

I myself spent a year on here daily when i was diagnosed about five years ago, I just re-registered. I think different people think of this forum in different ways. Some use it as a tool, others find comfort in not feeling alone with this disease, and maybe some just want to help other people.

I dont know , im a combination of all these. Im a pro active person, i like to research and get opinions, great place for that.

Ah... but I don't believe you, Kevin. Chris just reinforced the message that it's a "man cave". Although I suspect you're right that we wouldn't be able to understand the language - it's a series of grunts.