A.S. Face 0158: Jayson Sacco

The Ankylosing Spondylitis Project

The Voices of Ankylosing Spondylitis

My name is Jayson Sacco and I was diagnosed with Anklyosing Spondilitis when I was about 14 (in 1984). Not much was known and for many years before this I lived with what was “growing pains”. There were days as a kid when the hips/legs just wouldn’t work, back aches that no amount of aspirin could alleviate and family that just thought I was being lazy and not wanting to do things or work around the house. The pain got worse as I got older and the medications I was on just didn’t do much. By age 21 I had my first total hip replacement on my left hip and at 23 I had a total hip replacement on my right hip. This helped, but the back was still a constant source of pain. As I got older I started getting occasional attacks of iritis and when that wasn’t bothering me it was vertigo attacks that would lay me up for days. Through this all I became very self-reliant, not wanting anyone to pity me or feel that I was limited. Psychologically this disease takes its toll on you…leaving you feeling like less of a person, not able to do simple things without experiencing pain that would curl a non-afflicated person up into a ball. For the first 20+ years I was diagnosed with AS I had never meet anyone else with it. No one that could relate to what I was going through. Through the internet I have now meet people who are going through the same situations, and though I have not meet any of them I know I am not alone and reading the others stories is comforting.

Two years ago after 18 years my left hip wore out so it was time to have a revision done. I went into the hospital in July of 2009 to have the surgery done. While at home the first week from the hospital I just didn’t feel right, the hip didn’t feel right and my biggest fear came to..I had to have the hip done again. So in August, four weeks after the left hip was done it was done again. This was tough and I am still healing. Two-plus years later and I am on a cane, but the words posted on the thefacesofanklyosingspondilitis.com have rung true……When something bad happens you have three choices. You can either let it define you. Let it destroy you, or you can let it strengthen you!  I have chosen to let it strengthen me, there are people in this world that are in far worse situations than me and as long as I can fight, I will!  I have AS, it doesn’t have me!

At age 41, my mind tells me that I am about 20 while my body tells me I am in no shape to do what I want…but like many of you this doesn’t stop me, I just adapt and fight on. Though many people I encounter will never understand the trials I go through with AS, all of you with it understand and that is a bond that we all share. Stay strong and define AS, don’t let it define you!

San Antonio, Texas United States of America

11 Responses to “A.S. Face 0158: Jayson Sacco”

  1. Dear Jayson,

    Thank you so much for sharing your story with us. Thank you also for including the quote from the site, it is a quote I have kept close for many years. I believe in looking for the positive things in life and staying strong.
    It is true, we share a bond that none will understand.
    Sincerely Cookie

  2. I thought that your story was very inspiring and truthful. I have a question though….I wasn’t diagnosed until age 36 when I had iritis…..I think my symptoms really flew into high gear during my pregnancies at age 33 and 34 and during the third trimester of both pregnancies…. I had serious bouts of vertigo. I had never had vertigo before, but am very sensitive to motion sickness; however, once you truly experience vertigo…you know the difference immediately. I had another bout of vertigo recently on a water slide (of all things) and it took me awhile to get over that one. I have never hear anyone else mention vertigo on my support group websites and wonder if there is something with the vertigo and the iritis….anyway, thanks for sharing.

    Melissa in NC (#114)

    • Melissa,
      I have always had severe bouts of vertigo (usually lasting for weeks) before the onset of iritis. And I had iritis 2 times over a year before being diagnosed with AS. Right now, I am having my 3rd episode of iritis, and sure enough, it was preceded by vertigo (which I am still struggling with). My rheum. says he has never heard of AS related vertigo – but from reading here I see I’m not alone. I all my life have been VERY sensitive to motion, too – no amusement park rides, dramamine before travel. Interesting how this all might be related.
      Jill (who will post her story, soon)

  3. I never knew you went through so much at a young age Jay . . truly inspiring that you’ve kept your chin up through all you’ve had to go through . . . You are an amazing man and I admire your strength and great attitude you’ve kept through it all :))

  4. @Cookie, thanks for an amazing site. @Melissa-As a young child, and even now if I sit in the back seat of a car I am getting car sick. The vertigo for me started when I was in my late 20’s. I had never had it before and it started after my iritis started. When my vertigo starts it is a 2-3 day affair where I am bedridden and can hardly walk. Just sitting up makes me nauseated. Interesting idea about iritis and vertigo…hmmm. Thanks!

  5. Very inspiring story Jayson, thanks for sharing! Wishing you a pain free holiday! Claudia

  6. Thanks Claudia! I wish I could give everyone a pain-free day for Christmas! But that which does not break us, makes us stronger! Merry Christmas to all!

  7. I still think there is a connection with the vertigo and iritis- I had dizzy spells and thought it was BP related before my first bout of iritis….I will bring it up to my rheumy as well.

  8. Jayson, thank you for telling your story. I am in TX … Only have been for 3 years, but am grateful as the small town compared to DFW had about 3 sets of Rheumatologists. 3 offices. My cousin had Lupus who is about our age and finally put her in long term remission. Maybe forever. Through an RA drug….. Test. I forget what they call it ….. A trial I guess. Anyway, blessings to you …..it’s nice to read thru everyone’s stories.
    Feel free to write. It is great to have support.
    Stephanie #480

  9. Hi Jayson, my AS brother. I was having a really difficult day and feeling so alone and then I saw your post. I’ve deleted social media due to so much judgement and I never talk to anyone who understands. I have never heard of another fellow ASer who has vertigo. I had an attack several months ago and pain so bad in my right leg I couldn’t walk or barely stand for 11 days. Now I have constant burning and headaches and it’s like something is eating my brain. I’m having such a hard time and when I read your post I didn’t feel alone anymore. Thank you for sharing. So sorry for your suffering. You are not alone…❤️

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