Congenital Adrenal Hyperplasia

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Congenital Adrenal Hyperplasia
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    Selbsthilfegruppe #supportgroup

    This evening I will go to a support group for Pituitary and Adrenal disorders called Glandula Network here in Germany.
    I contacted them in need because I feel quite lonely dealing with all this alone.
    I had the need to start sharing and talking about my experiences with the disease.
    It weighs too much on my heart and soul.
    By time it just becomes heavier and heavier.
    I feel like there is nothing I can do about it.
    I feel this weight on my shoulders that I cannot carry on my own any more.
    All the frustrations with doctors not knowing what exactly to do with me.
    It’s so hard.

    But I am a little afraid of going because I always have this strong feeling of not belonging.
    Feeling anxious.

    Maybe I will meet someone who I can relate to or who can relate to me.
    I think the self introduction will cause me the most energy.
    Finding correct words to describe my situation.
    When I am nervous my head just gets blank and I will forget what I want to say.
    I hope I will be able to say anything.
    I am autistic and I worry about stuff like lights that are too bright and peoples eyes on me etc

    I will go and try my best
    Love Joanna

    #Autism #CongenitalAdrenalHyperplasia

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    To my fellow Addison peeps, does anyone find their upper back hurts when they are due their next dose of steroids? (I’m on hydrocortisone)

    #AddisonsDisease #AdrenalInsufficiency #Adrenoleukodystrophy #AdrenalGlandTumor #CongenitalAdrenalHyperplasia #AdrenalFatigue