A.S. Face 1891: 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

11 Responses to “A.S. Face 1891: 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

    • Thank you for giving me the opportunity to warn people about the dangers of AS that are all to often unknown or ignored.

      • You are most welcome, thank you for being brave enough to share such a heartbreaking reality.
        You have already impacted so many people. I have received message after message telling me they will be going to get checked and they promise to take AS more seriously.
        Job well done Shaun
        All my love Cookie

  2. Thank you for sharing your story with us. I have been having spikes in my resting heart rate above 100 for a couple of months now and have had a couple people recommend I get checked out by a cardiologist and pulmonologist bc it’s been hard to breathe as well. I have been putting it off bc I haven’t wanted to accept I could be having yet another after so many complications already caused by this disease. After reading your story I am going to make myself an appointment with a cardiologist to be checked out and monitored as your story has opened my eyes that what I am experiencing isn’t me being paranoid, it’s instead me being smart!

  3. Dear Shaun,
    I am feeling so sad after reading this. You must be devastated after this happening to you and that in the beginning they didn’t believe you. I hope you come trough this all. This AS really sucks. From the bottom of my heart I hope you find peace in everything after what happened and that your sweet Lily may rest in Peace…
    Sincerely Walter. A.S.- face 1838.

  4. Wow, Shaun, just WOW! Thank you for sharing your amazing story- I am glad you are still here. I am also so sorry about the loss of your baby and hope that you can recover both mentally and physically from that ordeal. I have read about AS-associated heart trouble but I don’t think I have heard of someone that was actually affected. I am so sorry it happened to you and for the way it occurred. I will definitely pass your story on- I have had AS for almost 40 years, diagnosed for about 25, but now my 24-year old son was diagnosed last year and we suspect that my 22-year old daughter has it as well. Once again, thank you for sharing and I hope you can recover to the max and get back to some sense of normalcy.

    (((big hug))) for you,
    Tom
    Face #738

  5. Dear Shaun,
    Thank you for bravely sharing your story of physical pain and suffering in addition to the loss of your child; maybe your story will save a life.
    God Bless You and may your sweet Lily Rest In Peace.

  6. Dear Shaun, thankyou for sharing your heartbreaking story & joining our A.S. Family… gentle hugz hun xx

  7. Oh my, how heartbreaking. I’m so very sorry, the pain of losing a child is unimaginable. I have times where AS often leaves me feeling hopeless and broken, and when I look at my little boy it is all I need to help push me though the tough times. I’m not sure what I would do without him. My heart goes out to you, from one warrior to another xoxo

  8. My heart goes out to you Thank you for sharing your story.

  9. For I will restore health unto thee, and I will heal thee of thy wounds, saith the Lord Jeremiah 30:17

    You have been through a lot. Will be praying for you.

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