PWS Publications from other Countries

The following publications, and more, are available from these overseas PWS Associations:

PWSA (UK)

http://www.pwsa.co.uk/index.php/what-is-pws/186-publications

A Handbook for Parents and Carers of Adults with Prader-Willi Syndrome (2nd Revised edition)
Extensively revised and updated with sections on health, sexual development and ageing issues; dietary management; psychological issues and behaviour management; ethical and legal issues; social life and relationships; education, training and work; residential care and supported living; benefits, allowances and services.

Healthy Eating and PWS
Understanding why a person with Prader-Willi Syndrome (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.

Teenagers with Prader-Willi Syndrome: A handbook for parents and carers
The teenage years can be particularly difficult for people with Prader-Willi syndrome. They and their parents are faced with a sometimes bewildering array of changes and choices. This 42 page A4 handbook aims to inform parents and carers about those changes, and includes chapters on: the characteristics of PWS; ethical issues - control vs rights and responsibilities; dietary management; psychological issues and behaviour management; social life and relationships; transition, further education, training and work placements; residential care and supported living; benefits and services; useful addresses and websites.

Our Babies and Children
This little 48 page booklet is a revised and updated 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 Prader-Willi syndrome. No child ever turns out quite the way we expected, and children with Prader-Willi Syndrome are no different: each parent has an individual story to tell, which is why it is best not to look too much to the future, but concentrate on helping your child to reach their full potential on a daily basis.

Babies and Children with Prader-Willi Syndrome: A Handbook for Parents and Carers
This 48 page A4 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 several parents of babies and children with PWS, as well has health professionals. It includes sections on:

  • What is PWS?
  • When a child is diagnosed
  • Developmental and health issues
  • Feeding babies, toddlers and young children with PWS
  • General principles of dietary management for children
  • Helping your child reach their full potential: early learning and behaviour management
  • Learning abilities, school and education
  • Family and social life
  • Financial help and providing for the future
  • Useful addresses

PWSA (USA)

http://www.pwsausa.org/publications/newpub.htm

  • Behavior Management – A Collection of Articles  
  • Child With Prader-Willi Syndrome: Birth to Three
  • Handbook for Parents
  • Management of Prader-Willi Syndrome, Third Edition, Springer
  • Michael and Marie
  • My Grandchild has Prader-Willi Syndrome:  Now What?
  • Nutrition Care for Children with PWS, Infants and Toddlers
  • Nutrition Care for Children with PWS, Ages 3-9
  • Nutrition Care for Adolescents and Adults with PWS
  • Out of Childhood: Our Teens and Adults with Prader-Willi Syndrome
  • Physical Therapy Intervention for Individuals with PWS
  • Prader-Willi Syndrome Is What I Have Not Who I Am! 
  • Red Yellow Green:  System for Weight Management
  • See Me, Hear Me, I’m Here, Too
  • Sometimes I’m Mad, Sometimes I’m Glad – A Sibling Booklet
  • Supporting Adults with Prader-Willi Syndrome in Residential Settings
  • Supportive Living Care Plan for Adult with PWS in Placement – BOOK & CD
  • Tool Box of Hope – For When Your Body Doesn’t Feel Good
  • Cards for Restaurants  
  • Cards for Legal Situations - for Law Enforcement Personnel

Canada

Prader-Willi Syndrome: Quality of Life  by Terrance N. James, PhD
This book covers health and development, education, leisure, residential options, vocational, family, self-awareness, behaviour and socialisation.  A paperback of some 316 pages, well-reference and well-indexed, it covers not only the professional viewpoint, but includes several quotes and anecdotes from people with PWS and their families, thus providing a balanced view of the syndrome and the person.  The author considers "what parents want" as well as what is possible and what needs some skilled support.  He writes very clearly and articulately about the issues that arise throughout the life of a person with PWS.  This book is an excellent resource for parents, professionals, caregivers and educators.  To purchase, contact the author directly: tn-james(at)shaw.ca

Prader-Willi Syndrome: Growing Older by Terrance N. James, PhD
There are not many resource books written on this topic, and this one is a welcome addition to what we know about aging in PWS.  It covers aging with developmental disabilities as a generality, and then specifically as it affects those with PWS including mental and physical health, behaviour, substance use, employment, socialisation, agency care.  The author has also provided us with 13 profiles of the older person and one delightful autobiography from John Hudson, aged 40, which has been excerpted from a paper he was invited to give at the1977 Ontario People First Conference.   Once again, Terrance James uses real people to present real issues so that we can understand what it means to have PWS.  At the same time, the author has researched and referenced his work giving a framework for professionals as well as parents and caregivers.  (Read a review of this book)