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  • Werdnig hoffman news

    Hi!
    I have 30th years and i have werdnig hoffman disease, i try to find some news for my illness. I tried to find if there are any hope for people like me, some therapeutic that can make my life easier.
    PS:sorry for my bad English.

  • #2
    Welcome to CC. We have several members with SMA, but not aware if any have SMA-1, also called Werdnig-Hoffman disease. Here is some information about this condition:

    https://rarediseases.org/rare-diseas...fmann-disease/

    We may not be able to help you with information about cure or the condition itself, but we may be able to help you with the effects of the condition and management of these. Feel free to ask questions.

    (KLD)
    The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.

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