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Fw: [Myotubular_Myopathy] Re: autosomal dominant myotubular myopathy

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  • TONI ABRAM
    Hello Sarah I don t remember whether I have replied to you previously or not.  My name is Toni - my father and I are diagnosed with  autosomal dominant 
    Message 1 of 1 , Jul 26, 2010
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      Hello Sarah
       
      I don't remember whether I have replied to you previously or not.  My name is Toni - my father and I are diagnosed with  autosomal dominant  centronuclear myopathy.  You can read our story at http://www.centronuclear.org.uk/theinformationpoint2010/pages/share_a_story/adults/toni_and_mike.html.  
       
      Please contact me at centronuclear.org@... if you have any questions about this form of the condition and I will be happy to try and help.
       
      You may also find the following pages useful:
       
       
       
       

       Toni



       



       


      From: "sarah_8292" <sarahw76@...>
      Sender: Myotubular_Myopathy@yahoogroups.com
      Date: Thu, 17 Jun 2010 02:57:35 -0000
      To: <Myotubular_Myopathy@yahoogroups.com>
      ReplyTo: Myotubular_Myopathy@yahoogroups.com
      Subject: [Myotubular_Myopathy] Re: autosomal dominant myotubular myopathy

       

      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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