Shaun Nicosia

Face 1891

Hi, my name is Shaun Nicosia and I live in Baton Rouge, Louisiana. I don’t want to be just a face of AS, but to make people more aware of complications caused by AS. There are so many people affected by AS that aren’t aware that this can be a fatal disease. It killed my baby and left me on life support for a month with only a 2% chance of surviving.

I was diagnosed when I was twelve years old. It was caught by my eye doctor, cause the “pink eye” I had never would get better. So on a hunch she ordered some blood test and that’s how it was found. I never had any other issues with AS besides the iritis in my eyes… that is until one morning that turned my entire world upside down. 2 years ago I was 8 months pregnant and all the sudden I had the worst pain I have ever experienced in my neck and upper back. Like a knife slicing me in half. I didn’t know what was wrong but I knew something was very very wrong. An ambulance took me to the er. I remember crying and yelling and begging anyone and everyone to help me. They were quite rude to me and thought I was just carrying on to get drugs. That is until I shot strait up in the bed and started hitting my chest and saying “i cant breathe ” then i fell back and went into cardiac arrest… then they took me seriously. I was rushed into the OR for an emergency c section. While being prepped a cardiologist was looking at my heart. He stopped them at the last minute and said they could not take the baby right now because if they did we both would die. I was imediatly transferred to another hospital where a cardio thoracic surgeon was waiting to do an emergency open heart surgery and c section at the same time.  What had happened was the AS had caused my aorta to be enlarged from the inflammation. It then dissected and then ruptured at the heart.  It was to late for my Lily, she had lost blood supply and died. I was in surgery for 10 hrs. I was given a 2% chance of surviving and was on life support for a month. My life will never be the same. Now from complications of that night I’m in heart failure,  and on top of that my body is still full of inflammation still and I can dissect and or rupture again. It’s so very scary to know that this can happen again with no warning and can kill u within literally minutes.
I don’t want anyone to have to go through something this traumatic and life altering. People I beg of u… if u have AS do your research, get a cardiologist and be followed by them closely. This affects way more than your spine.
I’m not trying to scare anyone, I just want people to be aware.
Louisiana, United States of America

One Response to “Shaun Nicosia”

  1. Dear Shaun,
    Thank you so much for having the courage to share such a heartbreaking reality of your journey with AS. Sweet Lily, may you rest in peace…
    Sincerely Cookie

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