Lambert-Eaton Myasthenic Syndrome

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Lambert-Eaton Myasthenic Syndrome
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    If you are living with a late-onset rare disease, what advice do you have for others navigating their daily life?

    From family planning and relationships, to employment and retirement, living with late-onset rare disease can affect every single touchpoint in a person’s life (much more than others even realize).

    But there’s strength in community, so we'd love for you to pay it forward. What’s a piece of advice you can share about your day-to-day experiences with navigating rare disease? What’s helped? What hasn’t?

    ✏️ P.S. We’re creating a story with one of our partners, Catalyst, to raise awareness around late-onset rare disease. Your answer may be used in an upcoming editorial story on The Mighty.

    #RareDisease #LambertEatonMyasthenicSyndrome #MyastheniaGravis #CheckInWithMe #Spoonie #MentalHealth #LungCancer #SmallCellLungCancer #MuscularDystrophy #IntravenousImmunoglobulin #NeuromuscularDisease

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    What advice do you have for someone who is newly diagnosed with a rare disease as an adult?

    Getting a rare disease diagnosis can be tough, but adding one on top of the complexities of adulthood can be even more challenging.

    What advice do you have for an adult who’s been newly diagnosed with a rare disease? How did you “adjust your sails” and adapt to make room for it?

    ✏️ P.S. We’re creating a story with one of our partners, Catalyst, to raise awareness around late-onset rare disease. Your answer may be used in an upcoming editorial story on The Mighty.

    #RareDisease #MuscularDystrophy #LungCancer #Spoonie #MentalHealth #LambertEatonMyasthenicSyndrome #MyastheniaGravis #neuromuscularimmunoglobulin #CheckInWithMe #SCLC

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    I'm new here!

    Hi, my name is KVemmer. I'm here because

    #MightyTogether I have been newly diagnosed with LEMs

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    LEMS

    I can relate to going to bed and waking up feeling like I had a stroke I was very happy with my job working with special populations I miss my job greatly One night everything changed looking for so thing to fill the void. My husband just passed May third and my only sister had very bad stroke. I can pray that gives me some peace. You cannot change destiny nobody knows what the future holds for any of us so be kind and patient no sense being angry it won’t change anything your illness does not define you sometimes starts something ends nothing is forever not even sorrow God bless the mighty

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    Hizentra. Been infusing it for two months and nothing is happening. Anyone else doing infusions!

    #LambertEatonMyasthenicSyndrome