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7383Our World: August 2012

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    Jun 23, 2012
      Hello Everyone
      Work is now underway on the next issue of Our World. Do you have a story tell? If so, we would love to hear from you. Maybe you have been involved in a fundraising event; have experienced something that you think would be of interest or benefit to others; maybe you have achieved something you would like to shout about; met another family or would be interested in writing an opinion piece on something that impacts your life.
      We are also looking for people to take part in our All About Me feature (questions below) and to include stories from people who are taking part in The Big Sunflower Project for Centronuclear and Myotubular Myopathy.
      There is no Our World without your stories, so please get in touch.
      Toni Abram
      The Information Point for Centronuclear and Myotubular Myopathy
      All About Me
      The Information Point is hoping to publish the next issue of Our World in August 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.

      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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