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