Hi, my name is Sean O’Connor, I am 26 years old, and I live in Italy.
Let me begin by saluting all of those who have had the courage to shave their stories and photos. I have seen some of the faces of A.S.
and there are many, probably most who have it worse than I do.
When I was growing up my uncle had a hunchback. He was really skinny, and when i asked my parents what was wrong with him they said he had AS. I didnt know what that was, and my parents said that I had been checked for the genetic marker associated with AS and that I did not have it.
About 7 years ago I started getting an inflammation along with stiff pain all up and down my leg, usually the left, sometimes both. It was always worse when I tried to stand up after sitting down for too long. Sometimes people would ask …”whats wrong with you?” when i tried to stand up. I got over it, convinced myself that it was simply “sciatica,” something i could easily get over with ibuprofen, which I did for the most part.
I had always been a very active athlete my entire life, but a two years ago i was in a motorcycle accident which injured my shoulder, preventing me from running or playing sports. During this time the inflammation got worse. My back started bowing over. I couldn’t turn my neck. My butt hurt, and i couldn’t spread my legs. Putting on my socks became one of the most difficult things I had ever done. Sleep became quite difficult. Getting out of bed started to make me cry. I was 25 years old and I couldn’t lift myself up! What was wrong with me?
People started to notice my posture changing, my weight loss, my lack of flexibility. I was told I looked like an old man, something I am sure many of you have heard. It is not nice to hear, especially for me. I was tall, athletic, so to become what I eventually did took quite a toll on my self esteem. My friend who watched over the years told me that my change reminded him of “Gollum” from Lord of the Rings.
In spring of last year my AS came at me in full force. My symptoms were chronic, unyielding, and worsening. I was streching everyday, trying yoga, and I was taking so many Ibuprofen the Bayer company should pay me royalties. I was convinced that my pain and condition was a result of my injuries that i sustained from my motorbike accident. I was going to sports medicine doctors and wasting money and nothing was helping. I think I was in denial. I think part of me knew all along that I had my uncle’s disease. Finally I went to the rheumatologist and was diagnosed, and given HUMIRA as a treatment.
The day after the first shot I could feel a difference- that very night maybe. I began physical activity again, swimming, stretching, running, kung-fu, yoga, and eventually I even began to play sports again. Now, almost a year later, I am almost back to my original shape. I have gained much of the weight I lost back, and due to the medicine and many changes in my lifestyle and diet, I can finally sleep, even on my stomach!!! (an impossible feat only one year ago)
I still have pain, worse at night. My spine and neck and hips make a lot of noises, and sometimes I have trouble standing up straight. But let me tell you that it’s nothing compared to what it was like a year ago.
I hope that many more victims of AS can be helped as I have been, that with proper treatment and a healthy lifestyle AS doesn’t have to ruin your life. My thanks to those who promote AS awareness and to my medical community and family which help me to fight, and I am happy to say I am winning.
God Bless you all.
Sean Patrick O’Connor