Myasthenia Gravis News Forums Forums Relationships and Social Life Do you find it difficult to raise awareness for Myasthenia gravis?

  • Do you find it difficult to raise awareness for Myasthenia gravis?

    Posted by jodi-enders on June 12, 2023 at 6:00 am

    Most of us diagnosed here were unfamiliar with Myasthenia gravis before our symptoms. So it is no surprise that explaining MG to others can be intimidating when it may still confuse us. 


    It may seem crazy not fully understanding a disease we live with. But, there is so much complexity and misunderstanding in the science world of how this disease works. And MG is very individualized, which confuses others and may even make them think we are clueless. We may think we understand MG well until someone asks us questions we may not know. 


    It is Myasthenia gravis awareness month, But spreading awareness can very understandably be scary! 


    Do you find it challenging or nerve-wracking to talk about Myasthenia gravis with others? Which parts are daunting?

    paul-spychalski replied 5 months, 2 weeks ago 3 Members · 5 Replies
  • 5 Replies
  • paul-spychalski

    June 14, 2023 at 3:39 pm

    Nobody has heard of MG!

    • paul-spychalski

      June 16, 2023 at 3:16 pm

      I agree, and they don’t care uless you fall or start talking funny.

  • phyllis

    June 15, 2023 at 7:57 am

    I do find it difficult, personally, to raise awareness for MG. I guess I’m still grappling with this diagnosis and don’t want to draw any more attention to myself.

  • david-s

    June 15, 2023 at 9:52 pm

    I do not find it difficult to chat with others about my gMG.

    During my monthly IVIG infusion this week there was a gentleman there that was being treated for GuillainBarré.   (Three of them this week – very unusual.)

    He was quite open and wore a T-shirt  with: “Ask me about Guillain-Barre” on the front of his T-shirt.

    gMG has had a great impact on my life, but of it, I am not ashamed.

    I try to share what is not happening with my muscle/nerve connections and how that limits my activities.

    I find it helpful for others to know why I may not be able to form words, why I walk much slower than everyone else, why I must rest so often, get tremors and other symptoms that I might show.






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