My name is Lenora and I have AS. My father has AS. We are both HLA-B27 positive. I was officially diagnosed at age 49, several years ago. I’ve had various issues since my 20s. Most of those issues were attributed to the wear and tear of teaching, parenting and being overweight. In fact, most of my issues were blamed on my weight. It’s very frustrating being dismissed by a doctor who says “if you’d only lose weight you’d feel better.” Like I haven’t tried? BTW that same doctor tested me for the HLA-B27 gene after my dad was diagnosed and told me I was NEGATIVE! (More on that later) That was way before we could see our tests results ourselves. Grrr. All of those years I believed it was all my fault. I found a wonderful doctor who diagnosed me with Polycystic Ovarian Syndrome. All of my neck, back and hip pain that was attributed to my weight didn’t go away after I lost 90 pounds. I lived with it. Life is busy. At 49 when my hands were so affected and I couldn’t stand the pain anymore, I went to my current PA crying. I told her about the old HLA-B27 test. She dug through stuff. It was POSITIVE! That doctor lied to me. My current PA did a bunch of labs and x-rays then referred me to a rheum. It’s been 2.5 years of ups and downs finding meds that work for me but I keep moving forward. What else can we do?

Minnesota, United States of America

One Response to “Lenora”

  1. Dear Lenora,
    Thank you so much for sharing your story with us.
    Sincerely Cookie

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