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    Mitochondrial Disease?

    I have a friend with Mitochondrial Disease in the state of California. She is having trouble with getting appropriate care. The latest is not getting appropriate pain control and they have told her that she is best to just "stay comfortable," stop care, and pass away. Nobody wants this, including her.

    Is there any resources for patient advocacy for this condition? Any hospitals, positions within hospital, etc?

    We have tried UC Davis, Stanford, University of Washington (Seattle - they said they could treat, but not do follow up care -- unfortunately friend is now too sick to travel until we can find stabilizing care and pain control).

    Any ideas?

    Thank you so much.

    #2
    This is a site for spinal cord injury and disease. I am not sure that we will be much help for you.

    I am sorry about your friend and would suggest that you look at UCSF also.

    ckf
    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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      #3
      Thanks very much for the ideas. I appreciate your help!

      P.S. I knew this was more focused on SCI/D, but it was the only place I could think to start when I heard how many resources had been exhausted. Thank you so much, again!

      Mystery

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        #4
        It is not a rare diagnosis. Google "Mitochondrial Disease" with quotes and forum together.
        I have had periodic paralysis all my life. I lost my ability to walk in 2011 beginning with a spinal block, which was used for a hip fracture caused by periodic paralysis.

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          #5
          Originally posted by nonoise View Post
          It is not a rare diagnosis. Google "Mitochondrial Disease" with quotes and forum together.
          Thank you NoNoise. In a short search, it appears that she and her family have found similar / those same options that I stumbled onto at first.

          I will have to keep looking.

          I appreciate, as always, the in-depth and quick help I have always received around here. CareCure is a wonderful group of people.

          Thank you.
          Mystery

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            #6
            Just keep doing what we all do, look for a miracle.
            I have had periodic paralysis all my life. I lost my ability to walk in 2011 beginning with a spinal block, which was used for a hip fracture caused by periodic paralysis.

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