Useful Articles

These articles have been compiled from papers delivered at the 10th National MPS Conference in Melbourne in 2004.  The Society thanks each of the authors who have edited the articles for publication on the website.  They have also been published in the September/October 2004 Linking Hand.

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Write Your Own MPS Story

The Communications Team would love to hear from MPS families and adults about their stories of life with MPS.  To assist you to write your own story, we have developed a list of questions to use as a base or outline for your story.

Stories can be emailed to This email address is being protected from spambots. You need JavaScript enabled to view it. or posted to the National Office.  Please send or attach some photos of you and your friends and family to illustrate your story.

Family Story Questions

  • When was your MPS affected child born and were there any indications at or around the birth that your child had MPS;
  • How many other, if any, siblings does your MPS child have and when were they born;
  • How was your MPS child diagnosed and how did you and your family deal with that situation;
  • Detail the progress that your child made in their early years, are there any things about those early years that worked well or didn't work well that it might be useful for other MPS families to know;
  • Has your child attended school and if so, was this a mainstream or a special school, what sort of assistance did your child require/receive, what insights can you pass on to other families about how this worked or didn't work well;
  • If your child has gone through surgical or other medical procedures, how did you and your family deal with that and was there anything that you did that might assist other families facing the same issue;
  • Depending on the age of your child, are there some stories of their growing up years that are touching, amusing, courageous, sad – stories that mean a lot to your family that you would like to share about your MPS child;
  • Describe what is special about your MPS child, give a snapshot of their personality and special attributes, the things that they enjoy and don't like and how they communicate that to you;
  • Describe what it has meant to you and your family to have an MPS child, how each member of the family has coped with having a disabled family member and what are the good and the difficult things that you have had to come to grips with;
  • If you have lost your child or family member to MPS, is there any part of their final stage of the disorder that you feel comfortable sharing with others.

MPS Adult Family Story Questions

  • When you were born, do you know whether there was any indication that you were affected by MPS and if so, have your parent/s told you about those early days (and if so, do you want to share any of those stories);
  • What MPS condition do you have;
  • How many other, if any, siblings do you have and when were they born (and are they also affected by MPS);
  • Do you know when your condition was diagnosed and how did you and your family deal with that situation;
  • Detail the progress that you made in your early years (which your family might have told you about or which you remember), are there any things about those early years that worked well or didn't work well that it might be useful for other MPS families to know;
  • Have you attended school and if so, was this a mainstream or a special school, what sort of assistance did you require/receive, what insights can you pass on to other families or MPS adults from the point of view of being the person in receipt of assistance about how this worked or didn't work well;
  • If you have gone through surgical or other medical procedures, how did you and your family deal with that and was there anything that you did that might assist other families or MPS adults facing the same issue;
  • If you are receiving a course of treatment like ERT, what has your experience of this been, what has worked or not worked well for you, what insights can you give to any families or MPS adults who might also go through this treatment;
  • Are there some stories about your growing up years that are amusing, courageous, happy or sad – stories that mean a lot to you and your family that you would like to share about your life with MPS;
  • Give a snapshot of your personality and your special attributes, things that you enjoy and things that you don't like, what you do in relation to work, or creative pursuits, any sport or general interest hobbies that you do etc, what your day to day life is like;
  • Describe what it has meant to you to have MPS and how your family and friends have coped with you having a disability and what are the good and the difficult things that you have had to come to grips with.

 

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