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autosomal dominant myotubular myopathy

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  • tones_mom
    My son has been just been diagnosed with the autosomal dominant form of myotubular myopathy. I am looking for anyone who either has or know someone with this
    Message 1 of 4 , Jan 16, 2010
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      My son has been just been diagnosed with the autosomal dominant form of myotubular myopathy. I am looking for anyone who either has or know someone with this disorder. It is extremely rare and I can't find any good information it on any website.
    • Wendy
      Hi Tones mom. Please look at Toni Abram s website - see http://centronuclear.org.uk/theinformationpoint2010/pages/about/about.html and Toni herself has this
      Message 2 of 4 , May 13, 2010
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        Hi Tones mom.

        Please look at Toni Abram’s website – see http://centronuclear.org.uk/theinformationpoint2010/pages/about/about.html and Toni herself has this form of CNM and has listed hers and her father’s story under ‘Share a Story’.

        She also has presence on Facebook and is so lovely and helpful to chat to.  Search for The Information Point for CNM and MTM.

        Best wishes to you.

        Wendy

        (Zak’s mum)

         

        -----Original Message-----
        From: Myotubular_Myopathy@yahoogroups.com [mailto:Myotubular_Myopathy@yahoogroups.com] On Behalf Of tones_mom
        Sent: 16 January 2010 19:57
        To: Myotubular_Myopathy@yahoogroups.com
        Subject: [Myotubular_Myopathy] autosomal dominant myotubular myopathy

         

         

        My son has been just been diagnosed with the autosomal dominant form of myotubular myopathy. I am looking for anyone who either has or know someone with this disorder. It is extremely rare and I can't find any good information it on any website.

      • TONI ABRAM
        Hello My name is Toni - my father and I are diagnosed with autosomal dominant centronuclear myopathy - you can read our story at
        Message 3 of 4 , May 13, 2010
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          Hello
           
          My name is Toni - my father and I are diagnosed with autosomal dominant centronuclear myopathy - you can read our story at http://centronuclear.org.uk/theinformationpoint2010/pages/share_a_story/adults/toni_and_mike.html.
           
          Information on the condition is rare but you will find some at http://centronuclear.org.uk/theinformationpoint2010/pages/about/about.html.
           
          In my experience, many people diagnosed with adult onset cnm do not know which form of the condition they have, although I am aware of a few who are members of the Information Point on Facebook at http://www.facebook.com/group.php?gid=24629335020&ref=ts.  You are very welcome to join us there and if you want to message me on Facebook, I would be happy to introduce you to some of the other adults I know of.
           
          Toni
           



          www.centronuclear.org.uk              |             www.buy.at/theinformationpoint

           




          From: tones_mom <tones_mom@...>
          To: Myotubular_Myopathy@yahoogroups.com
          Sent: Saturday, 16 January, 2010 19:57:29
          Subject: [Myotubular_Myopathy] autosomal dominant myotubular myopathy

           

          My son has been just been diagnosed with the autosomal dominant form of myotubular myopathy. I am looking for anyone who either has or know someone with this disorder. It is extremely rare and I can't find any good information it on any website.

        • sarah_8292
          Hello. Have you been able to find more information? My 2 year old daughter has been diagnosed with autosomal dominant form of myotubular myopathy also. I look
          Message 4 of 4 , Jun 16, 2010
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            Hello. Have you been able to find more information? My 2 year old daughter has been diagnosed with autosomal dominant form of myotubular myopathy also. I look forward to talking with you.
            Sarah
            sarahw76@...

            --- In Myotubular_Myopathy@yahoogroups.com, "tones_mom" <tones_mom@...> wrote:
            >
            > My son has been just been diagnosed with the autosomal dominant form of myotubular myopathy. I am looking for anyone who either has or know someone with this disorder. It is extremely rare and I can't find any good information it on any website.
            >
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