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All About Me: April 2012

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  • tonilouisa71
    The Information Point is hoping to publish the next issue of Our World in April and we are now looking for people to take part in our All About Me feature.
    Message 1 of 3 , Feb 25, 2012
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      The Information Point is hoping to publish the next issue of Our World in April and we are now looking for people to take part in our 'All About Me' feature. If you would like to take part, please answer the questions below and return these to centronuclear.org@... with photos if possible.

      If you are new to the group and haven't seen Our World before, please see our back issues at http://centronuclear.org.uk/theinformationpoint2010/pages/newsletters/newsletters.html.

      We are keen to include stories about males and females, of all ages, by people affected by all forms of the condition and from anywhere within our global community. Answers can be as long or as short as you feel appropriate and you may answer for yourself or for a child in your care.

      If you feel there is more you would like to say that isn't covered by the questions please feel to amend them or include an introduction about yourself. If there is a question you would prefer not to answer, please leave it out.

      If you take part, a draft copy of the article will be sent to you for checking prior to publication.

      Toni Abram


      Questions:

      1. What form of CNM / MTM do you have e.g. dominant, recessive, x-linked, unknown?
      2. When did you first get diagnosed?
      3. What symptoms prompted your diagnosis?
      4. How long did it take to get you diagnosis?
      5. How were you diagnosed e.g. muscle biopsy?
      6. What impact did the diagnosis have on you?
      7. Have you explained CNM / MTM to family members and what was their reaction?
      8. What implications do you think it has it had on your family?
      9. Has it affected you e.g. telling your children, starting a family, genetic counselling?
      10. Do you have advice for people who are looking for a diagnosis?
      11. What are your current symptoms?
      12. What treatment are you having, and have you had?
      13. How did you find a doctor?
      14. What has been your experience of the healthcare system and healthcare professionals?
      15. Has your diagnosis had any health insurance implications for you?
      16. What advice would you give to someone who has just been diagnosed with cnm / mtm?
      17. What's your favourite book / film / music?
      18. What did you want to be when you were younger?
      19. What is a favourite / memorable event from your childhood?
      20. Who do you think has most influenced you in your life and why?
      21. If you could have dinner with one person, alive or dead, who would it be?
      21. Something you would change?
      22. What's the best advice you've been given or what is your philosophy on life?
    • tonilouisa71
      The Information Point is hoping to publish the next issue of Our World in April and we are now looking for people to take part in our All About Me feature.
      Message 2 of 3 , Mar 8, 2012
      • 0 Attachment
        The Information Point is hoping to publish the next issue of Our World in April and we are now looking for people to take part in our 'All About Me' feature.
        If you would like to take part, please answer the questions below and return
        these to centronuclear.org@... with photos if possible.

        If you are new to the group and haven't seen Our World before, please see our
        back issues at
        http://centronuclear.org.uk/theinformationpoint2010/pages/newsletters/newsletter\
        s.html.

        We are keen to include stories about males and females, of all ages, by people
        affected by all forms of the condition and from anywhere within our global
        community. Answers can be as long or as short as you feel appropriate and you
        may answer for yourself or for a child in your care.

        If you feel there is more you would like to say that isn't covered by the
        questions please feel to amend them or include an introduction about yourself.
        If there is a question you would prefer not to answer, please leave it out.

        If you take part, a draft copy of the article will be sent to you for checking
        prior to publication.

        Our World cannot exist without your contributions, so I hope you will consider taking part, so we can continue rasing awareness of centronuclear and myotubular myopathy.

        Toni Abram


        Questions:

        1. What form of CNM / MTM do you have e.g. dominant, recessive, x-linked,
        unknown?
        2. When did you first get diagnosed?
        3. What symptoms prompted your diagnosis?
        4. How long did it take to get you diagnosis?
        5. How were you diagnosed e.g. muscle biopsy?
        6. What impact did the diagnosis have on you?
        7. Have you explained CNM / MTM to family members and what was their
        reaction?
        8. What implications do you think it has it had on your family?
        9. Has it affected you e.g. telling your children, starting a family, genetic
        counselling?
        10. Do you have advice for people who are looking for a diagnosis?
        11. What are your current symptoms?
        12. What treatment are you having, and have you had?
        13. How did you find a doctor?
        14. What has been your experience of the healthcare system and healthcare
        professionals?
        15. Has your diagnosis had any health insurance implications for you?
        16. What advice would you give to someone who has just been diagnosed with cnm
        / mtm?
        17. What's your favourite book / film / music?
        18. What did you want to be when you were younger?
        19. What is a favourite / memorable event from your childhood?
        20. Who do you think has most influenced you in your life and why?
        21. If you could have dinner with one person, alive or dead, who would it be?
        21. Something you would change?
        22. What's the best advice you've been given or what is your philosophy on
        life?
      • tonilouisa71
        The Information Point is hoping to publish the next issue of Our World in April and we are now looking for people to take part in our All About Me feature.
        Message 3 of 3 , Mar 8, 2012
        • 0 Attachment
          The Information Point is hoping to publish the next issue of Our World in April
          and we are now looking for people to take part in our 'All About Me' feature.
          If you would like to take part, please answer the questions below and return
          these to centronuclear.org@... with photos if possible.

          If you are new to the group and haven't seen Our World before, please see our
          back issues at
          http://centronuclear.org.uk/theinformationpoint2010/pages/newsletters/newsletter\
          \
          s.html.

          We are keen to include stories about males and females, of all ages, by people
          affected by all forms of the condition and from anywhere within our global
          community. Answers can be as long or as short as you feel appropriate and you
          may answer for yourself or for a child in your care.

          If you feel there is more you would like to say that isn't covered by the
          questions please feel to amend them or include an introduction about yourself.
          If there is a question you would prefer not to answer, please leave it out.

          If you take part, a draft copy of the article will be sent to you for checking
          prior to publication.

          Our World cannot exist without your contributions, so I hope you will consider
          taking part, so we can continue rasing awareness of centronuclear and myotubular
          myopathy.

          The closing date for articles for this issue is 2 April 2012.

          Toni Abram


          Questions:

          1. What form of CNM / MTM do you have e.g. dominant, recessive, x-linked,
          unknown?
          2. When did you first get diagnosed?
          3. What symptoms prompted your diagnosis?
          4. How long did it take to get you diagnosis?
          5. How were you diagnosed e.g. muscle biopsy?
          6. What impact did the diagnosis have on you?
          7. Have you explained CNM / MTM to family members and what was their
          reaction?
          8. What implications do you think it has it had on your family?
          9. Has it affected you e.g. telling your children, starting a family, genetic
          counselling?
          10. Do you have advice for people who are looking for a diagnosis?
          11. What are your current symptoms?
          12. What treatment are you having, and have you had?
          13. How did you find a doctor?
          14. What has been your experience of the healthcare system and healthcare
          professionals?
          15. Has your diagnosis had any health insurance implications for you?
          16. What advice would you give to someone who has just been diagnosed with cnm
          / mtm?
          17. What's your favourite book / film / music?
          18. What did you want to be when you were younger?
          19. What is a favourite / memorable event from your childhood?
          20. Who do you think has most influenced you in your life and why?
          21. If you could have dinner with one person, alive or dead, who would it be?
          21. Something you would change?
          22. What's the best advice you've been given or what is your philosophy on
          life?
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