Welcome to our virtual community! Start by browsing through the personal stories featured here.
We have organized these stories into two categories: Your Stories -- stories sent to us at the Spondylitis Association of America -- and selections from The Faces of Ankylosing Spondylitis project. You will also
find episodes of
AS Life Live!”
an online talk show for people with AS hosted by Dan
Reynolds – an AS patient and lead singer of the rock band Imagine Dragons.
We’d love your story as well! Send it to us at Programs@spondylitis.org
By Amber Panagos
Tuesday, October 04, 2016
Although my diagnosis is new my disease is not. I’ve had chronic back pain since my early 20’s and it’s been slowly progressing ever since. By the time I hit 30 I refused to accept the “it’s just back pain, take these narcotics” diagnosis. I’ve been tossed back and forth between doctors and specialist for numerous years. Most of them understood my pain but never really had an answer for me, that is until July 4, 2011 when I was admitted to the ER with a kidney stone. As weird as this may sound, it was actually a blessing in disguise. They did a CT to check on the kidney stone, however, the ER doctor seemed more interested in my spine. He asked me if I had any back or bone issues, which I replied, “that’s all I am, a back and bone issue.” He stated that the findings on the CT show classic signs of Ankylosing Spondylitis. This was news to me, Ankylo…what?” Once I started researching AS, it was like I was reading an autobiography, the puzzle pieces just started falling into place. I scheduled an appointment with my MD to discuss the ER doctor’s findings and after blood tests and x-rays; she confirmed that I officially had AS. You may be asking yourself the same question that I did, after previous years of x-rays, a bone scan and MRI, why didn’t my MD figure this out? Well, it’s not for her lack of trying, she stood by my side these past three years and assured me that I wasn’t going crazy and that she would do whatever it took to figure out what was going on with me. She admitted she really hadn’t considered Ankylosing Spondylitis as it’s more common in men than woman and I had no family history of AS (which we now know this is false, I’m just the only one who has received the correct diagnosis.) I have been referred to a promising Rheumatologist and am currently undergoing treatment that will hopefully change my quality of life for the better!
So here I am, 34 years old and although I’m not happy about this diagnosis, it is nice to finally have all my questions answered. I’m well into the fusing process and have now lost two inches in height due to kyphotic posture. My hips, knees, ankles, elbows and shoulders are affected as well as my left eye, jaw and teeth. My ribs, left lung and kidney are also affected and my body is littered with bone spurs but enough about the debilitating and onto the inspiring. I have a wonderful husband and two beautiful daughters who remind me everyday how lucky I am. They are in turn my reason to never give up, never give in and never lose hope, my reason to stand tall and stay strong in my fight to live life to the fullest even with restriction.
I want to thank my husband, family, friends and everyone in the AS community for all your comfort and support and a special thank you to Cookie for creating this website, such a wonderful idea! We fuse together to raise Awareness and Hope that someday there will be a cure!
Oregon, United States of America
2/13/2018 1:31 PM
Thank you Amber for sharing your story. As I've told you before, I'm a huge fan of your advocacy efforts! btw, I'm face #1001. Kindest regards, Rich
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