A.S. Face 0536: Alene Shafnisky

 I began to have symptoms of AS beginning in my 20s, but no one connected the dots.  I had been extremely athletic in my youth, including collegiate athletics.  I thought the pain was due to overuse, or repetitive injury.  It wasn’t until I started having recurring iritis, that my opthalmologist asked me about AS.  In my own research I knew I had the symptoms of AS, but didn’t think I’d have something so rare.

One of these trips for my eye treatment, I happened to call my dad, which was the first I knew that he had it, too, having tested positive for the HLA marker.  Turns out, as I like to say, the force is strong in my family – my uncle also was HLA positive, with cardiopulmonary problems that hastened his death at the age of 52.  It seems now upon research that nearly everyone with my family name behind my dad, has had it.  Thankfully cholesterol problems haven’t affected me, but almost every other hallmark of the disease is present.  Right now I’m on biologics, have tried nearly every medication that’s out there.  Now it’s just a question of managing the existing damage and pain and hopefully heading off more.

It’s been frustrating to be sure, having always been active and athletic and now, just not having the energy some days.  Like many with AS I have new secondary conditions like Meniere’s.  My pain management doctor likes to say that HLA-B27 causes all sorts of unexpected problems, and we just roll with it when new symptoms arise.  I’ve got some great help to make sure I don’t overdo things but still sometimes, having to add additional down time to my schedule to recover.  It’s tough sometimes not to let your condition define you, but it’s the only option if you want to be in control of your life.  It’s remarkable and so helpful to find out that so many others are out here for support.

This is a remarkable resource to all of us, thanks!

Pennsylvania United States of America

2 Responses to “A.S. Face 0536: Alene Shafnisky”

  1. Welcome, Alene! As you mentioned, having no energy is another hallmark of A.S.–one of my worst symptoms, too! I am wondering if you are in a play center for cats? Your cat is beautiful by the way! Wishing you all the best, Stephania

  2. Dear Alene,
    Thank you so much for sharing your story with us.
    Sincerely Cookie

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