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What's something you wish you were told when you were diagnosed?

We learn a lot from our diagnosis through experience, trial and error, and sharing information. What's one thing you wish you would have been told when you were first diagnosed?

  1. the gastroenterological issues

    1. You aren't alone! Several of our health leaders also reposrt digestive and stomach issues. You may be interested in the articles they wrote on the subject: https://axialspondyloarthritis.net/living/digestive-system-symptoms and https://axialspondyloarthritis.net/living/gut-issues. All the best, Kathy (Team member)

  2. Why I was not diagnosed until 2017, 37 years after AS symptoms started. I’m now 74.

    1. I can’t imagine waiting that long to get a diagnosis. What changed in 2017 that helped them finally figure it out? -Latoya (Team Member)

    2. That sounds crazy! I don't know if this was your case, but it has only been relatively recently that women were thought to get AS at all. They thought it was just a man's disease. That being said, many people have a very long journey until they get their diagnosis. Now that you have the diagnosis, have your medical team been able to offer you relief? All the best, Kathy (Team member)

  3. I wish I would have know about this web site when I got my as

    1. Oh friend. Having support through a caring community is truly invaluable. I'm sorry there wasn't a community like this for you at that time. Thanks for being here now. How did you manage? How are you managing currently? Wishing you respite and healing. Rebecca (team member)

  4. I wish they told me that inflammation effects your heart arteries too. You need to have a heart healthy diet and get a cardiologist to monitor your heart. I learned the hard way after a major heart attack that almost killed me and changed my life!

    1. ,
      I'm saddened to hear of your heart issues.
      Chronic inflammation can certainly be harmful to your organs, including the heart. It can cause blockage and damage to your heart and can also disrupt the heart's electrical system.
      How are things going today?
      ~Doreen (Team Member)

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