Have you nursed anyone with Muscular Dystrophy

  1. It must be my day for questions
    Thanking you in advance for reading and for answering if you can

    One of my very best friends has a form of muscular dystrophy - specifically -Kearns-Sayre syndrome

    I have researched a fair bit on this - know its signs symptoms etc and the generalised expectations- have been to a number of the world wide sites

    My friend is in her middle 50's and currently trying to cope with her ageing parents who are both in poor health -- totally another story

    My Question is have any of you cared for any one who has had this specific syndrom and what were your experiences - l would like to be able to know a little more especially about the long term and the possible expectations- if you know what l mean

    Thanks Tookie
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    About Tookie

    Joined: Dec '01; Posts: 1,192; Likes: 16
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  3. by   MollyJ
    Try this web site:
    National Organization for Rare Diseases:


    They will likely refer you to the Muscular Dystrophy Association web site, too.
  4. by   Tookie
    Thanks Molly J - Its a new site l hadnt been to before - have been to a number of the muscular dystrophy sites -
    would like to have experinces of anyone caring for this particular syndrom - if they have ever cared for them etc.