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  • orit viderman
    Hi, My name Is Orit. I have mtm. I am 22. I was wondering r there any sites on the net with people who have mtm. All the sites and chats that i found were for
    Message 1 of 7 , Aug 4, 2003
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      Hi,
      My name Is Orit. I have mtm. I am 22.
      I was wondering r there any sites on the net with people who have mtm.
      All the sites and chats that i found were for perents with children who have mtm and not the people themselves.
      I wanted to chat with young people that have it like me so if you know please tell me.
      Orit. 


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    • RUBEN CAMPOS
      hello Orit,no i don t know anybody of your ages with mtm. i have a 1 month old baby boy that has this condition i m like you. looking for a family or
      Message 2 of 7 , Aug 4, 2003
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        hello Orit,no i don't know anybody of your ages with mtm.
        i have a 1 month old baby boy  that has this condition i'm like  you.
         looking for a family  or someone to tell me more about this disease.
        orit viderman <orit_v2003@...> wrote:
        Hi,
        My name Is Orit. I have mtm. I am 22.
        I was wondering r there any sites on the net with people who have mtm.
        All the sites and chats that i found were for parents with children who have mtm and not the people themselves.
        I wanted to chat with young people that have it like me so if you know please tell me.
        Orit. 


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      • inotesiuol
        Hello Orit I just found your message on the Yahoo Myotubular Myoapthy Support Group. I am a 32 year old female with this condition and I have my own website
        Message 3 of 7 , Sep 4 12:26 PM
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          Hello Orit

          I just found your message on the Yahoo Myotubular Myoapthy Support
          Group.

          I am a 32 year old female with this condition and I have my own
          website (the Centronuclear and Myotubular Myopathy Information Point)
          which you might like to take a look at.

          My story is printed there.

          If you have any questions or would simply like to chat, please get in
          touch with me. I too find it frustrating that there are so few older
          people to chat to.

          Take care

          Toni Abram
          http://tonilouise.tripod.com
        • Toni Louise Abram
          Hello Orit I just found your message on the Yahoo Myotubular Myoapthy Support Group. I am a 32 year old female with this condition and I have my own website
          Message 4 of 7 , Sep 5 11:15 AM
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            Hello Orit

            I just found your message on the Yahoo Myotubular Myoapthy Support
            Group.

            I am a 32 year old female with this condition and I have my own
            website (the Centronuclear and Myotubular Myopathy Information Point)
            which you might like to take a look at.

            My story is printed there. The site covers the condition in all
            types of peole but my own personal interest is adults.

            If you have any questions or would simply like to chat, please get in
            touch with me. I too find it frustrating that there are so few older
            people to chat to.

            I hope that you might find something useful there. .



            Take care

            Toni Abram
            http://tonilouise.tripod.com

            --- In Myotubular_Myopathy@yahoogroups.com, orit viderman
            <orit_v2003@y...> wrote:
            > Hi,
            > My name Is Orit. I have mtm. I am 22.
            > I was wondering r there any sites on the net with people who have
            mtm.
            > All the sites and chats that i found were for perents with children
            who have mtm and not the people themselves.
            > I wanted to chat with young people that have it like me so if you
            know please tell me.
            > Orit.
            >
            >
            > ---------------------------------
            > Do you Yahoo!?
            > The New Yahoo! Search - Faster. Easier. Bingo.
          • J Juckers
            Hi Toni, Good to see you here, How are you? Take care Jess ... From: Toni Louise Abram [mailto:toni.abram1@btopenworld.com] Sent: Saturday, 6 September 2003
            Message 5 of 7 , Sep 5 8:22 PM
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              Message
              Hi Toni,
               
              Good to see you here, How are you?
               
              Take care Jess
              -----Original Message-----
              From: Toni Louise Abram [mailto:toni.abram1@...]
              Sent: Saturday, 6 September 2003 4:16 AM
              To: Myotubular_Myopathy@yahoogroups.com
              Subject: [Myotubular_Myopathy] Message to Orit

              Hello Orit

              I just found your message on the Yahoo Myotubular Myoapthy Support
              Group.

              I am a 32 year old female with this condition and I have my own
              website (the Centronuclear and Myotubular Myopathy Information Point)
              which you might like to take a look at.

              My story is printed there.  The site covers the condition in all
              types of peole but my own personal interest is adults.

              If you have any questions or would simply like to chat, please get in
              touch with me.  I too find it frustrating that there are so few older
              people to chat to.

              I hope that you might find something useful there.  .



              Take care

              Toni Abram
              http://tonilouise.tripod.com

              --- In Myotubular_Myopathy@yahoogroups.com, orit viderman
              <orit_v2003@y...> wrote:
              > Hi,
              > My name Is Orit. I have mtm. I am 22.
              > I was wondering r there any sites on the net with people who have
              mtm.
              > All the sites and chats that i found were for perents with children
              who have mtm and not the people themselves.
              > I wanted to chat with young people that have it like me so if you
              know please tell me.
              > Orit.
              >
              >
              > ---------------------------------
              > Do you Yahoo!?
              > The New Yahoo! Search - Faster. Easier. Bingo.



              To unsubscribe from this group, send an email to:
              Myotubular_Myopathy-unsubscribe@egroups.com



              Your use of Yahoo! Groups is subject to the Yahoo! Terms of Service.
            • Toni Louise Abram
              Hi Jessica I am fine thank you and am very pleased to have found this site -it has the most adult MTM sufferers I have every come across and I am hoping to get
              Message 6 of 7 , Sep 6 11:22 AM
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                Hi Jessica

                I am fine thank you and am very pleased to have found this site -it
                has the most adult MTM sufferers I have every come across and I am
                hoping to get to correspond with them, share symptoms and the like.

                I hope yoy are well too.

                Love Toni xx
              • Lill Tove
                Thank you:-) Lill Tove ... From: TONI ABRAM To: Myotubular_Myopathy@yahoogroups.com Sent: Tuesday, September 07, 2004 7:30 PM Subject: Re:
                Message 7 of 7 , Sep 8 1:18 PM
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                  Thank you:-)
                   
                  Lill Tove
                  ----- Original Message -----
                  Sent: Tuesday, September 07, 2004 7:30 PM
                  Subject: Re: [Myotubular_Myopathy] REMI

                  Hello Lill
                   
                  My name is Toni - I am 33 years old and live in Chester, UK.
                   
                  My father and I have the dominant form of this condition.
                   
                  I think your English is really good and I could understand everything you wrote - please don't let that stop you posting messages here.
                   
                  Welcome to the group.
                   
                   
                  Toni

                  Lill Tove <lilltov@...> wrote:
                  Hello!
                   
                  I want you all to know that I'm reading all your mails with big interest.
                  I dont write myself, because my english is very bad. But I am able to understand most of what I'm redaing.
                   
                  I have a nearly 15 years old healthy son, and Remi who is elleven months old with x-linked mtm.
                  I am pregnant with a boy. He is going to be born 30.12.
                   
                  Remi is still in hospital. We had him home a month during the days, but he had to stay in hospital at nights because the nurses who is gonna come home to us at nights are not finish trainig yet.
                   
                  I hope you understand what I mean, I dont always find the right words.
                   
                  We live in Norway.
                   
                   
                  Lill Tove
                   
                   
                   


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