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Do you find it difficult to raise awareness for Myasthenia gravis?
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.Â
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.Â
It is Myasthenia gravis awareness month, https://myastheniagravisnews.com/columns/what-do-when-myasthenia-gravis-awareness-month-over/. But spreading awareness can very understandably be scary!Â
Do you find it challenging or nerve-wracking to talk about Myasthenia gravis with others? Which parts are daunting?
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5 Replies
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Nobody has heard of MG!
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I agree, and they don’t care uless you fall or start talking funny.
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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.
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I think you will resonate with this article Phyllis, https://myastheniagravisnews.com/columns/whats-difference-between-attention-seeking-education/
– Jodi, Team Member -
I think you will resonate with this article Phyllis, https://myastheniagravisnews.com/columns/whats-difference-between-attention-seeking-education/
– Jodi, Team Member
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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 Guillain–Barré.  (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.
Scott
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