We have a range of publications for both parents and professionals.
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.
This guide sets out to identify the very special needs of people with PWS, and to suggest ways in which these can best be met within a residential home or a supported living situation. The suggestions are based on practices which have proved to be most helpful in producing a good quality of life for most people with PWS, both in the UK and internationally, and are in line, as far as possible, with current health and social services thinking and practice.
This updated 4th revision includes new sections on supported living and the Mental Capacity Act.
54 pages A4. ISBN 978-0-9552433-3-2
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
£4.95 (First copy FREE to people with PWS)
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
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
£7.00 (first copy FREE to parents)
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)
£5.00 (first copy FREE to new parents)
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
£8.00 (first copy FREE to parents)
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
£18.50 Available to UK purchasers only. Overseas purchasers are advised to purchase direct from PWSA USA
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
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
£52.50 Available to UK purchasers only. Overseas purchasers are advised to purchase direct from PWSA USA
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)
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)
CDs and DVDs
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.
£34.00 Available to UK purchasers only. Overseas purchasers are advised to purchase direct from IPWSO
July 2012 - Exercise ideas for people with PWS
April 2012 - Coming to terms with the PWS diagnosis
January 2012 - Research on oxytocin, report of a woman with PWS who has had a baby
July 2011 - Latest research
April 2011 - Latest research
January 2011 - Water intake and PWS
July 2010 - Vagus nerve research; transition to secondary school.
April 2010 - Vagus nerve research; research on appetite transition in under 5s; analysis of skin-picking in PWS.
January 2010 - Weight regulation in PWS, Face shape in PWS
October 2009 - Management of PWS in the work setting
July 2009 - Mental Capacity Act, Cycloidal vibration to reduce leg oedema
April 2009 - Epigenetics and PWS; growth hormone treatment for children with PWS
January 2009 - Blood testing for people with PWS
October 2008 - Adrenal insufficiency during acute illness; research in mice and the human brain
April 2007 - Pancreatic polypeptide; changing rates of genetic subtypes
July 2006 - CoQ10; male breast enlargement
April 2005 - TV documentaries and PWS
July 2004 - Report on the 2004 International Conference, report of a third woman with PWS giving birth, parents' experience of oestrogen treatment
December 2003 - Brain imaging study of hunger and satiety
September 2003 - Advanced bone age and early signs of puberty; excess breast tissue removal in a man with PWS
March 2003 - How PWS was recognised by Langdon Down in 1864