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Cardiac Amyloidosis

  • 1.  Cardiac Amyloidosis

    Posted 05-10-2021 22:58
    I recently been diagnosed with Cardiac Amyloidosis. I’ve had CHF since 2017 they ran some test and came up with the name of what I have. Does anyone else have or know about this disease, all I know I’d google has nothing good to say about this diagnosis. Any info would be helpful thank you Charles

    Sent from my iPhone


  • 2.  RE: Cardiac Amyloidosis

    Posted 05-11-2021 10:09
    Hi Charles. I know how you feel. Pretty sure I have the same thing (going for testing this week to confirm). Apparently it's a very rare disease which makes it difficult to find any real answers on it. I did find some great resources that I think may help you (they helped me a lot):

    https://www.youtube.com/channel/UCLfudB_bd3b_F170VRsCGng

    www.AmyloidosisSupport.org


    Best regards,
    Brett

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    Brett Temple
    Project Manager
    Sarasota FL
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  • 3.  RE: Cardiac Amyloidosis

    Posted 05-11-2021 14:21
    Thanks Brett, any information helps I appreciate, I just don't wanna think of it as a death sentence. 
    Thank you Sir.
    Charles

    Sent from my iPhone