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Paul Kahn

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  • TONI ABRAM
    Connie Glad to have been of help. Pat I will send you the email address separately. Toni ... From: connie guinn To: Myotubular_Myopathy@yahoogroups.com Sent:
    Message 1 of 1 , Aug 31, 2004
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      Connie
       
      Glad to have been of help.
       
       
      Pat
       
      I will send you the email address separately.
       
       
      Toni
       
      ----- Original Message -----
      Sent: Wednesday, September 01, 2004 1:53 AM
      Subject: Re: [Myotubular_Myopathy] Hi everyone - Age question (Paul Kahn)

      Toni,
      Yes!  That is exactly who I am talking about!  Thanks!
       
      -Connie

      TONI ABRAM <toni.abram1@...> wrote:
      I think the gentleman you are referring to is Paul Kahn.
       
      I have his story on my site but it is a few years old now - I have been in touch with him in the last couple of weeks and he has sent me some information so that I can update his page but haven't got around to doing it yet.
       
       
       
      Toni
       
      ----- Original Message -----
      Sent: Tuesday, August 31, 2004 6:44 AM
      Subject: Re: [Myotubular_Myopathy] Hi everyone - Age question

      gergelad,
      I read an article in the Quest magazine about an author who has adult onset MTM.   The author was in his late 50's, early 60's, I think.    I can't remember the guy's name, but I read the article within the last 1 1/2 years. My son, Benjamin, has x-linked MTM.  He will turn 2 years old in September, and I didn't start getting the magazine until he was about 6 months old.  It caught my eye because I knew the disease was rare and I was amazed that Quest had an article on it. 
      -Connie

      l.com> wrote:
      Hi everyone.  I hope you and your loved ones are doing well.
      I am new to this group, having found it only this morning.
      I was diagnosed as having myotubular myopath in January 2004 and I
      am looking for more information on this disorder.  It seems that my
      case is unusally as I did not have any symptoms until I was 48 -
      that was close to 2 years ago. From what I've read, even the AD type
      is usually identified before the individual turns 30.

      Can anyone advise me where I might find more information regarding
      older individuals with MTM?





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