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Caring for Children with Myotubular Myopathy

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  • Toni Louise
    I am looking to contact nurses with experience of caring for children with X Linked Myotubular Myopathy, following a recent request from a nurse, based in the
    Message 1 of 3 , Dec 31, 2003
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      I am looking to contact nurses with experience of caring for children
      with X Linked Myotubular Myopathy, following a recent request from a
      nurse, based in the UK, who cares for a child in their own home with
      help from the family.

      She would like to discuss long term ventilation and related illness
      and to make contact with other teams of nurses who care for children
      with this disorder.

      If you are a nurse with experience of caring for children with
      Myotubular Myopathy (anywhere in the world) or someone who knows of
      any nurses who might be willing to share their experiences, please
      contact me at toni.abram1@... for a contact email address.

      Thank you in advance for your help.


      Toni Abram
    • Wright, Janice (J)
      Hi Toni, I am blessed to have home nursing staff look after Matthew 24/7. The more permanent ones are staff nurses who have learnt mostly from us and by trial
      Message 2 of 3 , Jan 5, 2004
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        Message
        Hi Toni,
         
        I am blessed to have home nursing staff look after Matthew 24/7.  The more permanent ones are staff nurses who have learnt mostly from us and by trial and error.  We did get into contact with a very experienced PICU nurse (was head of PICU).  She is fantastic and very knowledgeable.  She is Afrikaans and battles a bit with the English but I am sure she will be only too pleased to help.  She is now a medical rep specialising in tracheas and has assisted greatly with home ventilation.  She also has sources throughout SA who she talks to.  She is on leave until next week and I will ask her to mail you soon.
         
        Thanks Janice
         
         
        -----Original Message-----
        From: Toni Louise [mailto:toni.abram1@...]
        Sent: 31 December 2003 17:03
        To: Myotubular_Myopathy@yahoogroups.com
        Subject: [Myotubular_Myopathy] Caring for Children with Myotubular Myopathy

        I am looking to contact nurses with experience of caring for children
        with X Linked Myotubular Myopathy, following a recent request from a
        nurse, based in the UK, who cares for a child in their own home with
        help from the family.

        She would like to discuss long term ventilation and related illness
        and to make contact with other teams of nurses who care for children
        with this disorder.  

        If you are a nurse with experience of caring for children with
        Myotubular Myopathy (anywhere in the world) or someone who knows of
        any nurses who might be willing to share their experiences, please
        contact me at toni.abram1@... for a contact email address.

        Thank you in advance for your help.


        Toni Abram




        Yahoo! Groups Links

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      • Toni Abram
        Message Janice This is excellent - thank you. so much. As well as posting a message here on the message board, I emailed some people also and I have had a
        Message 3 of 3 , Jan 5, 2004
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          Message
           
          Janice
           
          This is excellent - thank you. so much.
           
          As well as posting a message here on the message board, I emailed some people also and I have had a really good response.  I fired off 3 emails on New Years Eve afternoon requesting help and all 3 had replied to me when I checked back on New Years Day night.  How good is that? 
           
          However, I would love to hear from your nurse too.  Reading between the lines of the message that I received, I think that the more information that can be shared and passed on, the better both for the nurse and the child that she is caring for.
           
          Thank you once again.
           
           
          Toni
           
          ----- Original Message -----
          Sent: Monday, January 05, 2004 2:21 PM
          Subject: RE: [Myotubular_Myopathy] Caring for Children with Myotubular Myopathy

          Hi Toni,
           
          I am blessed to have home nursing staff look after Matthew 24/7.  The more permanent ones are staff nurses who have learnt mostly from us and by trial and error.  We did get into contact with a very experienced PICU nurse (was head of PICU).  She is fantastic and very knowledgeable.  She is Afrikaans and battles a bit with the English but I am sure she will be only too pleased to help.  She is now a medical rep specialising in tracheas and has assisted greatly with home ventilation.  She also has sources throughout SA who she talks to.  She is on leave until next week and I will ask her to mail you soon.
           
          Thanks Janice
           
           
          -----Original Message-----
          From: Toni Louise [mailto:toni.abram1@...]
          Sent: 31 December 2003 17:03
          To: Myotubular_Myopathy@yahoogroups.com
          Subject: [Myotubular_Myopathy] Caring for Children with Myotubular Myopathy

          I am looking to contact nurses with experience of caring for children
          with X Linked Myotubular Myopathy, following a recent request from a
          nurse, based in the UK, who cares for a child in their own home with
          help from the family.

          She would like to discuss long term ventilation and related illness
          and to make contact with other teams of nurses who care for children
          with this disorder.  

          If you are a nurse with experience of caring for children with
          Myotubular Myopathy (anywhere in the world) or someone who knows of
          any nurses who might be willing to share their experiences, please
          contact me at toni.abram1@... for a contact email address.

          Thank you in advance for your help.


          Toni Abram




          Yahoo! Groups Links



          Yahoo! Groups Links

          ++++++++++++++++++++++++++++++++++++++++++++++++++++++++++
                                                                    
          NOTICE: Please note that this eMail, and the contents thereof, 
          is subject to the standard Sasol eMail disclaimer which may be found at: 
          http://www.sasol.com/disclaimer                                                                                                          
          
          If you cannot access the disclaimer through the URL attached and you wish 
          to receive a copy thereof please send an eMail to 
          disclaimer@....
          

           


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