Publications

Publications available from IPWSO

IPWSO has a set of three loose-leaf folders, MEDICAL AWARENESS; GENERAL AWARENESS; and CRISIS.  Each folder has several inserts written by our experts and can be sent to you direct.  Contact IPWSO office.  These folders are written in English.

 

 

 

 

 

Contents of Medical and General Awareness folders:

• Prader-Willi Syndrome Guide (Moris A. Angulo, MD, Winthrop University Hospital, New York)
• The Genetics of PWS: An Explanation for the Rest of us: (Linda Keder, USA)
• Medical Alert for Treatment of Individuals with PWS/Medical Alert for routine or emergency treatment
• Anaesthesia & PWS (James Loker, MD, Laurence Rosenfield, MD)
• Weight & Behaviour Management
• Beyond the Diet - for the Dietician (Janalee Heinemann, USA)
• Questions & Answers on PWS
• Speech and Language in PWS
• My Child has Prader-Willi Syndrome, now what?
• Hear my Voice: written by John Hudson Symon, USA, who has PWS

Content of Crisis folder:

• To: Law Enforcement Personnel regarding Prader-Willi Syndrome
• Maladaptive Behaviour in Children with PWS, Down Syndrome and Non-specific Mental Retardation (Elizabeth M. Dykens and Connie Kasari, University of California, LA)
• Understanding and Managing the Behavioural and Psychological Components of PWS (Barbara Y. Whitman, PhD, St Louis University Dept of Pediatrics)
• Beyond the Diet - for the Dietician
• Questions & Answers on PWS
• Shelly has Prader-Willi Syndrome where dieting is a lifetime struggle & food is a killer
• Weight & Behaviour Management
• Adults with PWS - and Decisions Regarding Least Restrictive Environment and the Right to Eat (PWSA-USA)
• Eating Themselves to Death - Have "Personal Rights" gone too far in treating people with PWS? (Elizabeth Dykens, Barbara J Goff, Robert M. Hodapp, Lisa Davis, Pablo Devanzo, Fran Moss, Jan Halliday, Bhavik Sha, Mathew State, Bryan King)
• Impact of the Syndrome
• A Medical Reference Guide for Parents & Caregivers
• When is Stealing Not a Crime? (Janalee Heinemann, USA)

 

PWS Medical Alerts

This small purse-sized handbook covers specific medical problems in PWS including breathing abnormalities associated with sleep; acute gastrointestinal episodes; stomach problems; anaesthesia; clinical concerns for orthopedic surgery as well as important considerations for routine or emergency treatment.  It is now translated into many languages and available directly from our offices in Italy - contact Giorgio Fornasier g.fornas@alice.it.  These are essential little books to have on hand, for parents, caregivers and residential homes and schools - ready to be taken with you if hospitalisation or medical care is required.

If you require a translated version in your own language, IPWSO will email you a copy of the updated version in English for you to translate into your local language.  Please translate this (in word format) in the same outlay as the booklet (same page numbers and paragraphs).  IPWSO will insert your translation into our layout and prepare you a draft in pdf for you to check and approve. Once you approve this, we will provide a professional file for printing the booklet locally. 

We also ask that you send us 100 copies of your translated version for display and distribution at the international scientific meetings that IPWSO attends.  We will distribute these on your behalf. 

 

Written by Kirsty Reid and Peter SW Davies of the Children’s Nutrition Research Centre at the University of Queensland, this extremely timely booklet is an excellent guide to the critical importance of exercise for those with PWS. It describes why children with PW are likely to become obese, and throws the old chestnut of a “lower metabolism rate” out of the window: 

Many believe that children with PWS have a lower basal metabolic rate (amount of calories burned at rest) than other children. This belief is unfounded. Studies have shown that once a child’s height, weight, body composition and age are accounted for, the basal metabolic rate of a child with PWS is similar to that found in other children.”

It accepts, however, that children with PWS have more fat mass, and less lean mass, thus making exercise more difficult.

Preventing obesity, modifying eating behaviours, knowing how long it takes to burn off the food that we eat (for example, did you know that a simple banana muffin will take 111 minutes of cycling to burn off that amount of calories?) There are helpful hints on how to set out (and stick to) an exercise plan, how to introduce exercise to your child, the type of exercise that might be best for your child, and a whole range of resources of where to go to join activities or clubs.

 The book is well laid-out, easy to read, lots of pictures and insets of helpful hints. There is also a chapter on Growth Hormone treatment which reports on a study done that shows an increase in spontaneous activity when a child is on this treatment.

 

Thanks should be given to the University of Queensland, the Children’s Nutrition Research Centre, the Royal Children’s Hospital Foundation, and to Pfizer for their generous contributions.

This is the second booklet from the Children's Nutrition Research Centre and complements the first. Its emphasis is on the need to understand how important it is to control the food enviroment, maintain healthy eating habits, good nutrition and regular exercise.  The most important message is that it is a mult-faceted approach required to manage nutrition, not just locking the pantry.  

The message this booklet gives is four-fold:  (1) Remove temptation (2) Establish good behavioural routines around food (3) The diet must always be restricted, and (4) the quality must always be good.

 Well-written, easy to read, full of need-to-know information, this booklet for parents, families, and caregivers is free of charge (except for postage and packaging).  

You can download the pdf of this book from here, or order the booklet here.