I hope that all the fine folks that populate this blog community will indulge me for writing about something non-political and not particularly humorous.  It is a subject that is close to my heart.  

In 1985, I was diagnosed with a chronic degenerative inflammatory disease called Ankylosing Spondylitis (AS).  Most likely, you have never heard of it, or, if you have, it’s because you either know someone that has it or you are a Rheumatologist. 

AS strikes young men and women, usually between the ages of 17 and 35.  It robs them of their youth and often changes their lives forever. It can be painful and debilitating and cause the neck and spine to fuse, among other things.  I have a severe form of the disease and have been totally fused, both neck and spine, since 1989. Fortunately, I am still able to continue to work full time.  For those of you who are unfamiliar with the disease I know all too well, here are some facts:

Do you know that Ankylosing Spondylitis affects more people than are affected by Multiple Sclerosis, Cystic Fibrosis and Lou Gehrig’s disease COMBINED?  It’s true. 

 Recently, the CDC released new figures which show that there are only about 1.3 million people in America suffering from Rheumatoid Arthritis. That sounds like a lot, until you consider that they also estimate that there are up to 2.4 million Americans suffering from Spondylitis.

Current estimates are that 0.5% of the world’s population suffers from AS.  That’s over 33 MILLION people world-wide, and yet, most of the general public remains unfamilar with this disease.  Why? Well, I always joke that we either have a lousy PR firm or we need to have a major Hollywood star be diagnosed with it.  Just for comparison, Muscular Dystrophy, a disease which, you have to admit, is a household name thanks to Jerry Lewis, only affects about 30,000 Americans.  

AS is one of the oldest diseases known to mankind.  A number of Egyptian Pharoahs had it, and today, at least one rock star, (Mick Mars of Motley Crue), has it.  While there are a number ot treatment options available, there is no cure, and most current treatment options will only slow the progression of the disease, not stop it outright.

Since 1995, I have been online, writing about a place called Spondyville, a town where everyone has AS, and therefore no-one ever has to feel alone when dealing with this disease.  I don’t offer any medical information, I refer people to the Spondylitis Association of America for that, my main purpose is to help people with AS learn to cope, mostly through laughter, and let them see that having AS is not the end of the world, it's simply a different path than the one they thought they were going to be on.

In 2009. to raise AS awareness, I created the “April is Spondylitis Awareness Month” campaign and it has become quite successful, especially amongst the online AS community.  Now, I feel it’s time to connect people with AS from all over the world, and work toward a common goal, so I have started something called the Global Ankylosing Spondylitis Project (GASP), which is an attempt to raise AS awareness on a global scale, culminating in the celebration of World AS day on May 7, 2011.  Our slogan, “33 million people are Fusing Together,” is meant to show that people with Spondylitis are united in their desire to raise AS awareness amongst the general public, no matter where in the world they live.  

Since I started this project a few weeks ago, I have interacted with 'Spondys' from England, France, Italy, Australia, Bulgaria and Pakistan, to name just a few.  As I look at their pictures, I see so clearly that no matter where in the world you live, Spondylitis affects people in the exact same way.  We all look similar; same stooped posture, the same pain etched onto our faces, and the same strength of character in our eyes. We're like tempered steel.  

For me, I also feel it’s time to start educating my friends and acquaintances that I wouldn't ordinarily speak so intimately with, about this disease.  Which is why I wanted to post this here.   

Ankylosing Spondylitis is a disease that everyone should know more about. 

To learn more, visit the Spondylitis of America's website: www.StopAS.org aka www.Spondylitis.org

(To see how I poke fun at having Spondylitis: www.Spondyville.com )

Thanks for reading.