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What Makes You Rare?
Most people have never heard of Lambert-Eaton Myasthenic Syndrome when diagnosed, let alone when a friend of family member is diagnosed with LEMS. How do you explain your rare disease to them? How would you explain it to someone just diagnosed? Join in our #WHATMAKESMERARELEMS campaign and share your knowledge on what it means to be Rare!
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3 Replies
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That nobody knows from my outside appearance
that I am disabled!! -
I must agree – people look at you with disbelief because of the lack of external signs
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Romy and Ken, that is for sure! It makes things extra difficult when we are having a difficult day!
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