Spondylitis Association of America
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SAA Members Share Their Stories

How has AS or related disease effected your life? How have you coped? How were you diagnosed? What treatment(s) have you tried? We want to hear your story. Believe it or not, so do the millions of others afflicted by AS and related diseases. You can email your story to chris.miller@spondylitis.org or, if you have a video, upload it to YouTube and send us a link! We will then embed it here on our site.

I am a 19 year old male, and AS and I crossed paths back when I was 10 years old. I loved being active and as a result I was part of a football team, however the pain then started, I was not greeted by a gradual increase in pain levels I was suddenly struck by an intense wave of pain, I had no clue what it could be.

I can't remember the exact date but I remember the night well. It was the crack of dawn when I woke up and looked down to see my right leg hanging off the bed like I was fixing to get up and sleep walk. "Ha ha that must have been a weird dream" I say to myself before reaching for my watch on the side table. I was well into my growth spurt by this time, growing upward but not so much sideways just yet.


I am 29 years of age and was diagnosed with Ankylosing Spondylitis(AS) ten years ago. Like most people with AS, I was misdiagnosed before I was properly diagnosed. The docs gave me crazy pain killers and chalked it up to "Sciatica." The pain only got progressively worse for the next six months.

Video Story: Meet Felicia
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Video Story: Meet Adam
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Video Story: Meet Laurie
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Video Story: Meet Stephen
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Video Story: Meet Lenea
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I live in Sandpoint Idaho located 60 miles south of the Canadian border. We recognize the same people as we go about our daily business. While shopping, a clerk asked me, "Do you have ankylosing spondylitis?"

Expressing my surprise, "Yes, how do you know? And why do you ask?".

I am a 23 year old female diagnosed with AS last Oct. 2006 (HLA-B27 negative and Chinese-filipino). I just wanted to share my story. I was attending the University of Washington, when I first started noticing that I had trouble getting around campus. I was tired all the time and my knees and ankles were swelling, so I knew something wasn't right.

Getting to the ankylosing spondylitis diagnosis was like putting together a difficult puzzle with many pieces. I've had lots of aches and pains over the years which I attributed to overuse and abuse of my body, through sports and poor body mechanics.

I had developed JAS around the age of 10. One of the most difficult things with the process in the beginning was diagnosis. My parents had diligently taken me to doctors for a number of years at the onset, as it was very painful, involving swelling of joints and stabbing pain (total debilitation), and it seemed to have progressed from one joint to another in the course of a few months.

My name is Jamie. I am 35 years old and have had pain related to AS for the last 20 years. My story is very much the "typical" AS story, as I have found out over the years. I was about sixteen when my back pain started and I remember the exact moment it happened...

I'm seventy two. Hard to believe. I've had ankylosing spondylitis since my late twenties-early thirties I would guess - a long time.

I had a terrible case of iritis when I was thirty and remember well an injection of atropine directly into my eyeball.

Hi, my name is Julie Guyton. I am a 39 yr old mother of 3 daughters and wife of an awesome husband. Here is my story:

I think my symptoms started when I was in jr high. I was constantly having pain in my joints...especially my shoulders.

No one would listen.

My name is Laurie. I am 39 years old and have been in pain for 25 years. I recently joined this site in hopes to find people like me. Now I sit here in tears, after reading some of the stories that have been written, knowing I am not alone.

When I was seventeen years old, I remember it quite clearly, I was walking down the street, looking and feeling great, the sun on my face and the beauty of youth taking each step with me, when my hip seemed to almost give out. "Odd." I thought, so I simply slowed my pace and walked home with a slight limp.

Hi, my name is Guadalupe, I'm 31 and and a spondaholic.

So... How did I get my dx? Luck I guess. Over a year and a half ago, my dachshund became paralyzed. Don't yawn! It has a lot to do with it, I promise.

I was a budding new journeyman Construction Electrician, on the job just a few months when incredible muscle spasms from the waist down set off the better-get-to-the-doctor signal. My Family Physician and the Orthopedic Surgeon he sent me to finally diagnosed AS as a result of the observations...

At age 39, I was diagnosed with AS after nearly 30 years of bizarre symptoms that I had absolutely no idea were all related. As a young girl, I always had trouble sitting due to pain in my tail bone and numbness in my feet. A couple times I was taken to the emergency room with wrenching gut pain, typically this corresponded...

I'm 39 and live in NYC. I've suffered joint pain on and off since I was a child that was just written off as "growing pains". In my early teens, I was dx'd with chronic tendonitis in my feet and lower legs, then the knee pain began. After 5 years of knee pain and swelling, I had exploratory surgery and all they could find was chronic synovitis.

In late February of this year, my only child, my 9-year old son, Ethan, was diagnosed with A.S. Of course that sent me into an info-seeking frenzy. I read all I could and continue to do so, seeking out the best possible treatments for Ethan. It's exhausting. What's amazing, however, is Ethan himself.

WHEN MY CHILD WAS FIRST DIAGNOSED with spondylitis, my mothering instinct told me to shield him and protect him from pain. Fortunately for my son and our family, we had wonderful physicians who helped us gain the insight to prepare us for a life journey with spondylitis.

I OFTEN HAVE SAID, if Reiter's Syndrome (RS) were a person, I'd be on death row for premeditated murder. The disease is sinister and unpredictable, and it is always lurking in the background before another flare-up begins.

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