I began experiencing symptoms around the age of 23. Although I had periodically experienced symptoms prior to then, my first distinct memory was when my roommate, some friends and I went to the movies. I had been experiencing what I would come to learn was SI nerve pain. Following the movie my roommate dropped me off at the duplex we lived in. He drove off as I limped to the front door in the rain. When I got to the 3 or 4 steps to the door I collapsed in pain. After some time I was able to drag myself up the steps and into the house where I laid just inside the front door for over an hour from exhaustion.
Shortly after that incident I saw the first of what would be several doctors and was told everything from “we all get old” to “it’s all in your head”. After a while I started to believe them and learned to live with it. Almost ten years later I met my wife Kelli. Even though I was willing to give up she wasn’t. She just kept saying, “We need to get you in front of the right people.” After another 10 years we finally did when as a last resort I was sent to a rheumatologist.
At my first visit to the rheumatologist he did some basic movement tests and went over all of my previous X-rays, MRIs, etc. At that time he didn’t think there was anything within his realm that was wrong and didn’t feel he would be of much help. However, just in case, he was going to do a full blood workup. He told me to expect to hear back in a few days that everything was OK.
A few days later I heard back, but it wasn’t the news I expected. It was his nurse saying he wanted to see me and when could I come in. I was back in front of the doctor within the week and he was explaining this disease I had never heard of called ankylosing spondylitis and handing me a pamphlet on Remicade infusions. Of course I was in shock to say the least.
I was sent for a second opinion that went much faster than the first. The second rheumatologist reviewed my information and asked why the first thought there was a need for his opinion. In his opinion it was a no brainer and he didn’t need to see the films.
That diagnosis was in the Fall of 2012. Since that time daily life continues to be a struggle, but with the support of my wonderful family and a few very dear friends, I’ve been able to continue doing most of the things I enjoy, albeit not as often or without consequence.
As I do the best I can with my two boys (8 and 5) I can’t help but worry whether or not they’ll inherit AS as well.
South Carolina, United States of America
A Note from the creator of Faces of AS, Cookie Hopper
“It was important for me to do this, not for myself, but for each one of the Faces on this site and those who are still unknown. I wanted to show the reality of this disease and the courage it takes to live our lives. I wanted to honor those who have Ankylosing Spondylitis, who I admire and respect.”
Creator of Faces of AS, SAA Member, and Face 0062