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CRAZY ~ This is just sad

Forum: Autoimmune Diseases and Disorders


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April 24th, 2008, 08:31 AM
Becca's_Mommy's Avatar Becca's Mommy
Join Date: Jan 2006
Location: Oklahoma City, Oklahoma
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Someone posted this regarding spreading information on AS:

<sub><sup>"I think when you have a chronic disease such as this, which suffers
from a lack of name recognition, (for want of a better term), it can
only benefit the entire Spondylitis community, if each one of us
takes it upon themselves to become a walking advocate for AS
awareness. This can take many forms, but the main thrust would be, at
the very least, to impress upon people the name of this disease and
to direct them to where they can find more information if they are
interested in learning more. When I meet any medical professional,
especially one who seems unaware of, or has only a passing
familiarity with AS, I look on our interaction as an opportunity for
me to educate and enlighten them, and hopefully to get them
interested enough in knowing more about AS. If you don't feel you
are able to do that, you might try printing out the AS information
business card on the Spondyville website and use that as an ice-
breaker. Then throw out some stats about AS, such as: AS is more
prevalent than MS, Cystic Fibrous and ALS (Lou Gehrig's disease),
combined. That should at least get their attention. Every little
bit of awareness raising helps, so go for it.

P.S. It might be easier for people to remember if you tell them the
SAA website is: www.StopAS.org"

<span style="font-family:Verdana">OMG, more prevalent than MS, Cystic Fibrosis, and ALS combined??? Why is it that everyone looks at me crazy when I say the words Ankylosing Spondylitis? Why is it that 90% of doctors I see have to look it up when I tell them about it? That no one knows its devastating effects on peoples lives?? Why is there so little research to help cure it? All of the treatments we have are basically "piggybacked" off of RA treatments. It is just sad!</span>

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April 24th, 2008, 04:04 PM
::er!ca::'s Avatar Platinum Supermommy
Join Date: Jul 2006
Location: USA
Posts: 36,283
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