Myotonic Muscular Dystrophy

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Myotonic Muscular Dystrophy
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    What's New in Myotonic Muscular Dystrophy

    No warning

    Why does the pain hit with such ferocity that it takes my breath away and sends me to the floor? Why does it hit with no warning that it's coming? I promise I have not done too much, I have not lifted something too heavy or without proper form, I have not been sick or injured recently. The pain comes out of nowhere and everywhere. Thanks for letting me whine.
    #ChronicPain #Fibromyalgia #MyotonicMuscularDystrophy


    Rare Disease

    On 2/28 I went with members of my patient community to Senator Dianne Feinstein's office to thank her for her previous support ( she's on the Appropriations Committee and share with her representative information about our disease myotonic dystrophy This weekend I attended a NORD event and learned more about the Orphan Drug Act and met some great patients and caregivers representing other rare diseases I'm feeling a new sense of empowerment #RareDisease #MyotonicMuscularDystrophy #PatientAdvocates #NORD #OrphanDrugAct


    How many of you have a rare disease that so many of your friends can't remember the name of? #MyotonicMuscularDystrophy#MyotonicDystrophyType1




    “My name is Bill, I live with Adjustment Disorder and Myotonic Muscular Dystrophy, Type 1 and I want to tell you that it’s OK to cry. #mightymen

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