Publications
We have a range of publications for both parents and professionals.
You can download free leaflets from this website, or order purchaseable publications from our office.
Downloadable free information
Route Maps - age ranges
Our Route Maps were developed as part of a Genetic Alliance project with the aim of providing parents, carers and professionals with information about what services in health and social can be accessed at various ages for the person with PWS, as well as information about the health and social care needs of individual with PWS at those ages. They will be updated on a regular basis, and we welcome comments, feedback and suggestions for amendments or additons.
0 - 5 years 5 - 10 years 10 - 15 years 15 - 19 years 19 - 25 years 25 years +
Information about PWS
Characteristics of PWS
Diagnostic criteria for PWS
Genetics of PWS
Endocrine disorders in PWS
Managing PWS
Health care
Information for GPs (general practitioners)
Helping the infant with early feeding difficulties
Weight management in PWS
Behaviour management
Educating the child with PWS
Speech and language
Vision and care of the eyes
People with PWS and work: Best practice guidelines for employers
Information for families
My sister or brother has PWS: Information for siblings
Grandparents: A message from a fellow grandparent
Publications for sale
To order any of the publications below, please download and complete our order form and send with cheque/postal order to PWSA UK, 125a London Road, Derby DE1 2QQ
PWSA UK Publications
NEW! Our Way of Life - by and for people with PWS
Our Way of Life is especially for people with PWS. It explains what it is like to live with PWS by people who know, and how people with PWS and others can manage so that their lives can be positive and fulfilling. It contains real life stories and photos of people with PWS - all of whom are different, but all of whom share many of the daily challenges of living with the syndrome.
58 pages A5 with colour photos. ISBN 978-0-9552433-4-9
£2.95 (First copy FREE to people with PWS)
Healthy Eating with Prader-Willi Syndrome
Understanding why a person with PWS needs to keep to a lower calorie diet, as well as knowing some of the basic principles of good nutrition, are crucial to helping the person maintain a healthy body weight.
The first part of this book explains what is unusual about PWS and how good dietary management can help maintain a healthy weight for people with the syndrome. It includes sections on eating healthily as well as managing the food environment. In the second part there is a range of delicious, healthy, lower calorie recipes which everyone will enjoy.
54 pages full colour. ISBN: 978 0 9552433 0 1
£5.00
Babies and children with Prader-Willi Syndrome - A Handbook for Parents and Carers (Revised Edition)
This handbook covers the basic information that parents of newly diagnosed babies and children with PWS may need to know, both about the syndrome and about accessing help from health, education and social services. It gives guidance on how to manage the syndrome so that the child is helped to have the best possible start in life.
It also provides a useful starting point for professionals with little previous knowledge of PWS.
It is clearly written in accessible, jargon-free language, and has been produced in collaboration with parents of babies and children, as well as health professionals.
It includes sections on: What is PWS; When a child is diagnosed; Developmental and health issues; Feeding babies, toddlers and young children; General principles of dietary management; Helping your child reach their full potential; Learning abilities, school and education; Family and social life.
46 pages full colour. ISBN: 0 9521023 6 6
£5.00 (first copy FREE to parents)
Our Babies and Children (revised edition)
This is a collection of stories which we hope will give a positive uplift to those with new babies and small children who have just been given a diagnosis of PWS. The days ahead may sometimes look very bleak but, as these stories show, there are many joys to having a child with PWS.
It is now seven years since the first stories were told, and some of those parents have provided an update for this revised edition. No child ever turns out quite the way we expected, and children with PWS are no different: each parent has an individual story to tell.
48 pages full colour (A5)
£3.00 (first copy FREE to new parents)
Teenagers with Prader-Willi Syndrome - A Handbook for Parents and Carers
The teenage years can be particularly difficult for people with PWS. They and their parents are faced with a sometimes bewildering array of changes and choices. This book aims to inform parents and carers about those changes.
It includes sections on: Characteristics of PWS; Ethical issues; Dietary management; Psychological issues and behaviour management; Social life and relationships; Transition, further education, training and work placements; Residential care and supported living.
Although aimed primarily at parents and carers, professionals in the fields of education, social services, care, and health will also find this book an invaluable guide to supporting the person with PWS through their teenage years.
46 pages with b/w photos. ISBN 0 9521023 8 2
£6.00 (first copy FREE to parents)
A Handbook for Parents and Carers of Adults with Prader-Willi Syndrome (2nd revised edition)
This handbook is primarily for parents of adults with PWS, but it will also be of use to anyone who lives with or cares for a person with PWS on a regular basis, or who wishes to learn more about the syndrome.
Throughout the book emphasis is placed on the fact that individuals with PWS share common traits, but they can also be very different from one another.
Care has been taken to ensure that the needs of people with PWS within their adult status are addressed, but this can be difficult to reconcile with their daily lives because so many people with the syndrome require a high level of support and even control to ensure that they lead a healthy and fulfilling life.
48 pages full colour. ISBN: 13 978 0 9552433 2 5
£6.00 (first copy FREE to parents)
Other publications
Growth Hormone and Prader-Willi Syndrome (Second Edition)
- A reference for families and care providers
Editor: Donald G Goranson
Extensive information about growth hormone treatment in PWS, including: effects of growth hormone in children; what is involved? families stories; information resources; growth hormone studies. This guide was produced for families in the USA. Whilst most of the information is relevant to a UK audience, the procedure for obtaining GH is not. PWSA UK have included a short insert as a guide to UK practice, written by Dr Shankar Kanumakala, Consultant Paediatrician, Royal Alexandra Children's Hospital, Brighton.
73 pages with colour illustrations and photos
Publisher: PWSA USA
£12.00 Available to UK purchasers only. Overseas purchasers are advised to purchase direct from PWSA USA
Exercise and Physical Activity for Children with Prader-Willi Syndrome - A guide for parents and carers
Kristy Reid and Peter SW Davies
This guide is intended to give a better understanding of the importance of managing your child's energy balance, exercise and/or activity levels. It explains energy intake and the importance of diet.
33 pages full colour
£3.95
Management of Prader-Willi Syndrome (3rd edition)
Editors: Merlin G Butler, Phillip DK Lee, Barbara Y Whitman
This new, thoroughly revised edition addresses the medical advances of the past several years. With advances in genetic testing, confirmation of the diagnosis is now relatively easy. Insights into molecular medicine have deepened our understanding of the syndrome. New pharmaceutical treatments have made truly incredible changes in patients' lives.
The first section of this new edition explains the complex genetics of PWS and procedures for clinical and genetic diagnostic evaluations. Next, the text provides an overview of medical issues and management across the life span, focusing on growth hormone treatment and gastrointestinal issues, obesity, and body composition.
Finally, a section focuses on the neurodevelopmental, neurocognitive, and developmental aspects of PWS and the accompanying lifespan management issues, including behaviour and crisis management, educational concerns, and vocational and residential options.
While primarily a medical resource for clinicians, the book provides vital information for everyone working with people with PWS and invaluable resources for carers and families.
550 pages with b/w illustrations. ISBN 0 387 25397 1
Publisher: Springer (2006)
Copyright: PWSA USA
£30.00 Available to UK purchasers only. Overseas purchasers are advised to purchase direct from PWSA USA
Prader-Willi Syndrome: Growing older
Terrance N James
This book challenges readers to think about quality of life and the ageing process. Importantly, it documents the stories of Canadians with Prader-Willi syndrome who are over the age of 40.
"I want to have the choice to decide what I want in my life. I want to have an apartment with my own support workers to help me keep myself and my apartment clean, to monitor my food intake and keep me safe. I know that I need someone to keep the cupboards locked and I need someone to keep me active to control my weight. I want to have some fun in my life. I have the right to have the same choices in life that you do." (John - age 40)
Terrance James has worked with PWS since the early 1980s as an educator and private practice rehabilitation consultant.
114 pages with b/w photos. ISBN: 978 0 9685838 1 4
Publisher: Poplar Publishing (2010)
£11.00
Prader-Willi Syndrome: Coping with the disease - Living with those involved
Urs Eiholzer
For many years, Urs Eiholzer has been engaged in the care of children with PWS and their families. He has published a great number of seminal scientific articles and contributions and supports a comprehensive, integrated treatment approach, taking into account both the biological and the psychological aspects of the syndrome.
This easily understandable book is specifically suited for non-professionals and presents the clinical picture of the syndrome, its genetic cause, state-of-the-art research results and treatment options as used in the author's out-patient clinic. The text is illustrated with graphics and complemented by an abundance of pictures.
120 pages full colour. ISBN: 978 3 8055 7846 2 (English)
Publisher: Karger (2005)
£15.00
Prader-Willi Syndrome - A Practical Guide (for teachers)
Jackie Waters
This book has been based on the work of researchers within the field of PWS, as well as considerable anecdotal information obtained from parents and carers. In order to obtain a larger picture of children with PWS within educational settings, questionnaires were circulated to members of PWSA UK to give to their child's teacher to complete.
Sections include: An introduction to PWS; Cognition; Preschool and primary age children; Secondary age children; Further education; The future. Each section contains suggestions for classroom and behaviour management, as well as educational techniques.
85 pages
Publisher: David Fulton (1999)
£15.00 Available while stocks last. This publication is now out of print.
CDs and DVDs
Food, Behavior and Beyond
Pittsburgh Partnership
This is a DVD, with Spanish subtitles, featuring presentations from Linda Gourash MD and Janice Forster MD on the practical management for the child and adult with PWS. It features sections on: Nutritional basics; Food and behavior; The behavior toolbox; Cognitive and behavioral traits; To medicate or not to medicate.
Linda Gourash is a developmental pediatrician with extensive clinical experience caring for children and adults in medical and behavioral crises related to PWS.
Janice L Forster is a child and adolescent neuropsychiatrist with more than 10 years experience managing hospitalized persons with complications of PWS.
Publisher: PWSA USA
£12.00 Available to UK purchasers only. Overseas purchasers are advised to purchase direct from PWSA USA
Best Practice Guidelines for Standard of Care in PWS
The proceedings of the 2008 and 2009 International Caregivers' Conferences
In 2008 and 2009 two international PWS Caregivers Conferences were held in Germany. This CD is a 205 page pdf of the proceedings from those conferences. It will be of particular interest to professionals in social care and education and provides the combined wisdom on best practice in care from around the world.
Contents include: The Pam Eisen Memorial Lecture, delivered by Prof Tony Holland; Environmental structure for PWS living; Communication with persons with PWS; Neurological, psychological and cognitive aspects of behaviour; Fitness, sports and motivation; Training for teachers in PWS; Nutrition; Crisis management; Communication between parents and caretakers; Environmental structure for the work situation; Aspects of psychological work with PWS; Interpersonal Relationships; Behaviour Management; Environmental structure of living best practices; Medical checklist.
Please note that the CD will ONLY be readable as a pdf on a computer.
Publisher: IPWSO
£30.00 Available to UK purchasers only. Overseas purchasers are advised to purchase direct from IPWSO
To order any of the publications above, please download and complete our order form and send with cheque/postal order to PWSA UK, 125a London Road, Derby DE1 2QQ
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