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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
linkinghand@mpssociety.org.au or posted to Joanna Betteridge at PO
Box 2142 Ivanhoe East Vic 3079. 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.
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.
This section of Publications will be updated
with details of newsletters which have been sent out to paid Members of the
Society. Please join the Society. The Linking Hand is produced
every 3 - 4 months (3 - 4 times a year).
Please click on these links to access a pdf file of
the front pages of recent Linking Hands:
For more details or a copy of the
Linking Hand, please email info@mpssociety.org.au
You will require Adobe Reader to view these pages -
this is available as a free download from
Adobe.
We have explanatory pamphlets as well as booklets on each
MPS syndrome. Below is a list of the booklets available and their cost
(not including postage).
Articles by parents and doctors dealing with management, long
term care and specific medical problems are also available. Photocopied
information is available on topics such as anaesthetic complications, spinal
problems and surgery. There are also articles written by family members on
"life with MPS" as well as ideas to help with feeding, management and
schooling etc.
The publication costs do not include photocopying or
postage. Photocopying is charged at 20 cents per page and postage as
incurred.
All articles, booklets and information are free to families
with an affected member. Quarterly newsletters are published and
distributed to members.
Please complete the attached Order
Form and forward it with your cheque to the MPS Office.
| Title of
Publication |
Cost |
| The Pattern of
Inheritance |
$5.00 |
| MPS I (Hurler
Syndrome) |
$5.00 |
| MPS II (Hunter
Syndrome) |
$5.00 |
| MPS III
(Sanfilippo
Syndrome) |
$5.00 |
| MPS IV (Morquio
Syndrome) |
$5.00 |
| MPS VI
(Maroteaux-Lamy Syndrome) |
$5.00 |
| Mucolipidosis II and
III |
$5.00 |
| Fucosidosis |
$5.00 |
|
Aspartylglycosaminuria |
$5.00 |
| Is your child having
anaesthetic? |
$5.00 |
| What to do when a
child dies |
$5.00 |
| Gastrostomies |
$6.00 |
|
Towards greater independence:
A
Guide for adults with mild MPS
|
$10.00 |
Please click on this link to read the
Conference Abstracts:
- Barbara Hopwood:
Getting the Most from Services
- David Cram et al: Preimplantation Genetic Diagnosis:
A new option for couples
- Margot Davey: Sleep Apnoea - Detection and Treatment
- Jim McGill: What is MPS
- Margaret Sahhar:
So we've been diagnosed with MPS
- Patrick Lo: Shunts in MPS - are they necessary
- Bruce Johnstone: Carpal Tunnel Syndrome
- Mandy Gregory and Virginia Wilson: Finding A Way Forward
- Making meaning and
facing the challenges of bereavement.
- David Sillence and
Jenny Hynson: MPS The later years
- Penny Pitt: The impact of Pre-implantation Genetic
Diagnosis on families
- Joyce Rebeiro:
Creative Stress Management
- John Hopwood: Update on Current Therapies
- Margaret Sahhar: Psychological and Social Impacts of Trial
Participation and Treatment
- Jim McGill: Funding for Enzyme Replacement Therapy
- David Ketteridge: Update on ERT Trials in MPS VI
- Helen O'Grady: BMT and ERT for MPS I (Hurler
Syndrome)
- Grace David: The Osteodystrophy in Mucolipidosis and
Treatment with Cyclic Intravenous Pamidronate
- Janice Fletcher: Hunter Syndrome Natural History Study
- David Sillence and
Jenny Ault: Mucopolysaccharidosis and Related
Disorders in Adolescents and Adults
- David Ketteridge: How are patients selected for
clinical trials?
- John Hopwood: Research, Future Directions
- John Hopwood: Global approaches to research,
understanding and public awareness
Please find the following powerpoint
presentations attached. These may be very slow to download as they are
often lengthy and have large volumes of graphics. Please be patient.
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