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7366Our World

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    Jul 11, 2011
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      Hello Everyone
      Work on the next issue of Our World is now underway. If you have already submitted a story for inclusion or are working on one - thank you.
      If you have a story you would like to share or if you would like to take part in All About Me (details below), there is still time to get involved, so please get in touch and if you  are taking part in The Big Sunflower Project for Centronuclear and Myotubular Myopathy, don't forget to tell us how you are getting on, so we can include your stories too.
      The closing date for this issue is 21 July. 
      Toni Abram
      The Information Point for Centronuclear and Myotubular Myopathy

      The Information Point is hoping to publish the next issue of Our World around July / August time 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.

      The Information Point is 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 or you can submit a team effort, such as that submitted by Wendy and Zak Hughes in our last issue (http://centronuclear.org.uk/theinformationpoint2010/newsletters/2011/2011_1/zak.html).

      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. What’s the best advice you’ve been given?
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