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Syndromes & Conditions - Prader-Willi Syndrome

BOOKS, VIDEOS & DVDS IN ACTIV LIBRARY - A SELECTION


Autism and other neurodevelopmental disorders / Hansen, Robin L. Ed.; Rogers, Sally J. Ed. -- Washington DC;London: American Psychiatric Publishing, 2013. xix, 306 p. ; 23 cm.
This book gathers and organises the most recent information in this field into a clinically useful volume that will enable clinicians, patients, and families to understand this range of disorders and make sound treatment treatment decisions in light of recent research. The chapters cover the disorders individually and present signs and symptoms; epidemiology and etiology; diagnostic approaches; evidenc-based interventions; and reviews of promising research. The authors also include information on support and resources for patients, families and communities.

SC/AUT AUT [P14879]








Behavior management for individuals with Prader-Willi syndrome / Hanchett, Jeanne; Greenswag, Louise R. -- Sarasota, Fla.: PWSA (USA) 1998. 49p
A collection of articles on various aspects of behaviour management with PWS including use of medications, skin picking, toilet training and social skills teaching.

SC/PRA HAN [P09551]








Behaviour management in Prader-Willi Syndrome / PRADER-WILLI SYNDROME ASSOCIATION (UK) -- Derby: Prader-Willi Syndrome Association (UK) 2002. 1 Pamphlet
This pamphlet gives an overview of why behavioural challenges occur in PWS, as well as suggestions on how to manage them.

VERTICAL FILE- Prader-Willi Syndrome [P13269]








Being the grandparent of a child with Prader-Willi Syndrome / PRADER-WILLI SYNDROME ASSOCIATION (UK) -- Derby: Prader-Willi Syndrome Association (UK) 1 Leaflet
A letter from a grandparent of a child with PWS who wanted to support his family and find out as much about the syndrome as he could.

VERTICAL FILE- Prader-Willi Syndrome [P13270]








Beyond the veneer : a guide to the essential features of residential care and supported living for adults with Prader-Willi syndrome. For purchasers and providers and parents and carers / Waters, Jackie Ed. -- Derby: Prader-Willi Syndrome Association (UK) 1997. 21p
The author identifies the needs of people with Prader-Willi syndrome and suggests ways in which these can be met within a residential home or supported living situation.

SC/PRA WAT [P08112]








The child with Prader-Willi Syndrome: birth to three / Wharton, Robert H. -- Sarasota, Fla.: PWSA (USA) 1999. 34p., ill.
The booklet is aimed at parents of children from birth to three diagnosed with Prader-Willi syndrome and professionals involved with early intervention. It comprises a parent's perspective, comprehensive overview of these years and recommendations for optimum care.

SC/PRA CHI [P09558]








The early years: a collection of articles regarding young children with Prader-Willi syndrome / PRADER-WILLI SYNDROME ASSOCIATION. -- Sarasota, Fla.: PWSA (USA) 1998. 1 vol. (var. paging)
A collection of articles written by parents about their children who have received early diagnosis of Prader-Willi syndrome.

SC/PRA EAR [P09553]








Exercise and crafts & activities for individuals with Prader-Willi syndrome: a collection of articles / PRADER-WILLI SYNDROME ASSOCIATION. -- Sarasota, FL: PWSA (USA) 1998. 1 vol. (var. paging)
A collection of articles on exercise from various sources. Includes specific exercises developed by exercise physiologists, as well as material on activities and crafts, which can be closly related to exercise.

SC/PRA EXE [P09552]








Food and health / Gellatly, Margaret S N. / PRADER-WILLI SYNDROME ASSOCIATION (UK) -- Derby: Prader-Willi Syndrome Association (UK) 1997. 37p
Nutritional and dietary advice for parents and professionals who are responsible for feeding children, teenagers and adults with Prader-Willi Syndrome.

SC/PRA GEL [P07657]








Growing up with Prader-Willi Syndrome: personal reflections of a mother / Janalee. -- Sarasota, FL: PWSA (USA) 1999. 35p
A collection of articles by a mother of a young adult with Prader-Willi syndrome reflecting on her and her son's life.

SC/PRA JAN [P09548]








A handbook for parents and carers of adults with Prader-Willi syndrome / Waters, Jackie. / PRADER WILLI SYNDROME ASSOCIATION (UK) -- Abbots Langley, Herts.: The Association, 1996. 44p
Written by a parent, this handbook gives practical hints and advice for those living with a person with Prader-Willi Syndrome. Issues covered include dietary management, psychological issues and behaviour management, social relationships and education and work experience.

SC/PRA WAT [P06171]








Handbook for parents and carers of adults with Prader-Willi Syndrome / Waters, Jackie. -- Derby: Prader-Willi Syndrome Association (UK) 2009. 49 p. ; 30 cm.
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 be very different from one another. (Book cover)

SC/PRA WAT [P13275]








Health care guidelines for individuals with Prader-Willi syndrome / Hanchett, Jeanne; Greenswag, Louise R. -- Sarasota, Fla.: PWSA (USA) 1998. 20p
The guidelines include suggestions for managing concurrent medical, developmental, behavioural, educational and social issues. The needs of each age group are addressed from the neonatal period through adulthood. A useful bibliography is included.

SC/PRA HAN [P09560]








Healthy eating with Prader-Willi syndrome / Waters, Jackie. -- Derby: Prader-Willi Syndrome Association (UK) 2007. 55 p. ; 30 cm.
The first part of this book explains what is unusual about Prader-Willi Syndrome and how good dietary management an 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 range of delicious healthy, lower calorie recipes which everyone will enjoy. (Book cover)

SC/PRA WAT [P13276]








My sister or brother has Prader-Willi syndrome : information for siblings / PRADER-WILLI SYNDROME ASSOCIATION (UK) -- Derby: Prader-Willi Syndrome Association (UK) 2003. 6 p. ; 30 cm.
A resource for siblings explaining PWS and with suggestions regarding how to cope, and how to help yourself.

SC/PRA MYS [P13274]








Nutrition care for children with Prader-Willi syndrome / Borgie, Karen H. -- Sarasota, Fla.: PWSA (USA) 1994. 12p
Written for parents of children with Prader-Willi syndrome to help them plan a healthy diet for their children that will allow growth without too many calories.

SC/PRA BOR [P09557]








Nutrition for adolescents and adults with Prader-Willi syndrome / Borgie, Karen H. -- Sarasota, Fla.: PWSA (USA) 1995. 24p
A practical nutrition guide for adolescents and adults with Prader-Willi syndrome. It includes worksheets that provide guidance for setting realistic weight goals and selecting and planning a diet plan.

SC/PRA BOR [P09554]








Our way of life: an information pack for people with Prader-Willi syndrome produced in co-operation with people with Prader-Willi syndrome / Waters, Jackie Ed. / PRADER-WILLI SYNDROME ASSOCIATION (UK) -- Derby: Prader-Willi Syndrome Association (UK) 1999. 1 vol. (looseleaf)
This information pack is designed for use by people with Prader-Willi syndrome. It covers information about the syndrome, a guide to healthy eating, medical matters, personal relationships and sexuality. It is well illustrated and includes puzzles and quizes to aid learning.

SC/PRA WAT [P08972]








Overview of the Prader-Willi Syndrome / Mitchell, Lota. -- Sarasota, FL: PWSA (USA) 1994. 14p
An overview of Prader-Willi syndrome outlining clinical features, etiology and treatment options.

SC/PRA MIT [P09549]








A parent's guide to alternative living arrangements / Lacy, Mildred. -- Sarasota, Fla.: PWSA (USA) 1997. 10p., + addendum 16p.
Booklet designed to assist parents who are contemplating short or long term out of home care for their adult son or daughter with Prader-Willi syndrome.

SC/PRA LAC [P09550]








Physical therapy intervention for individuals with Prader-Willi syndrome / Fragala, Maria. -- Sarasota, Fla.: PWSA (USA) 1994. 11p
Low tone, decreased strength, motor planning problems and delayed gross motor skills are common physical characteristics of children with Prader-Willi syndrome. This booklet provides general information about physical therapy interventions.

SC/PRA FRA [P09555]








Prader-Willi syndrome: a handbook for parents / Neason, Shirley Ann; Ceppos, Suzanne Wise. -- Sarasota, Fla.: PWSA (USA) 1999. 79p., ill.
Written by a parent for parents the handbook outlines the nature of Prader-Willi syndrome. There are chapters on weight control, mental, emotional and social development, education, health and life as an adult.

SC/PRA NEA [P09556]








Prader-Willi syndrome : a handbook for parents and carers of babies and children with Prader-Willi Syndrome / Waters, Jackie. -- Derby: Prader-Willi Syndrome Association (UK) 2001. 46 p. ; 30 cm.
This handbook covers the basic information that parents of newly diagnosed babies and children with Prader-Willi Syndrome (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. (Book cover)

SC/PRA WAT [P13273]








Prader-Willi syndrome: a practical guide / Waters, Jackie. -- London: David Fulton Publishers, 1999. 85p
Prader-Willi Syndrome is a relatively rare disorder and teachers who have a child with this disorder in their class may find it difficult to find information about it. This book provides details on the syndrome for teachers and includes teaching strategies and management techniques for children of different ages.

SC/PRA WAT [P09074]








Prader-Willi syndrome and the younger person: a handbook for parents / Waters,Jackie. / PRADER-WILLI SYNDROME ASSOCIATION. -- Woking: Prader-Willi Syndrome Association, 1992. 80p.
This book provides helpful information about Prader-Willi syndrome for parents.

SC/PRA WAT [P04437]








Prader-Willi Syndrome: home, school and community / James, Terrance N.; Brown, Roy I. -- Lond.: Chapman & Hall, 1992. 223p.
SC/PRA JAM [P04281]








Prader-Willi Syndrome information kit / PRADER-WILLI SYNDROME ASSOCIATION OF VICTORIA. -- Ringwood, Vic.: [1992?] l folder with 12 pamphlets + 8 loose sheets
1 folder with 12 pamphlets + 8 loose sheets.

SC/PRA PRA [P03855]








Prader-Willi syndrome: the best of training days. Selected presentations given at a series of multidisciplinary training days on the aetiology, characteristics and management of Prader-Willi syndrome / Williams, Alexandra Ed; Waters, Jackie Ed. / PRADER-WILLI SYNDROME ASSOCIATION (UK) -- Abbots Langley, Herts.: The Association, 1996. 132p
This edited volume provides practical information on the management of Prader-Willi syndrome.

SC/PRA PRA [P06172]








Prader-Willi & you / Duno, Patricia, J.; During, Ann M.; Jeffers, Janet M. -- Sarasota, FL: PWSA (USA) 1991. 30p., ill.
Written for children who have Prader-Willi syndrome this booklet covers three important areas: feelings, activities and diet.

SC/PRA DUN [P09559]








Skin picking / Gourash, Linda. PWSA (USA) 2008. 1 Leaflet
Reprint of an article from PWSA (USA) newsletter examining the 'skin picking' behaviour of people with Prader-Willi Syndrome and offering points on management of this behaviour.

VERTICAL FILE- Prader-Willi Syndrome [P13277]








Sometimes I'm mad, sometimes I'm glad: on being a Prader-Willi family / Janalee. / PRADER-WILLI SYNDROME ASSOCIATION. -- Edina, Md: Prader-Willi Syndrome Association, 1982. 32p. ill.
SC/PRA JAN [P04282]








Speech and language in Prader-Willi Syndrome / PRADER-WILLI SYNDROME ASSOCIATION (UK) -- Derby: Prader-Willi Syndrome Association (UK) 2003. 1 Pamphlet
This explains possible difficulties in speech and language associated with PWS and the role of speech and language therapy.

VERTICAL FILE- Prader-Willi Syndrome [P13271]








Teenagers with Prader-Willi syndrome : a handbook for parents and carers / Waters, Jackie; Mitchell, Kendra. -- Derby: Prader-Willi Syndrome Association (UK) 2005. 46 p. ; 30 cm.
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 book aims to inform parents and carers about those changes, and includes chapters on: the characteristics of PWS; ethical issues of control versus rights and responsibilities; dietary management; pyschological issues and behaviour management; social life and relationships; transition, further education, training and work placements; residential care and supported living; benefits and services; and useful addresses and websites.(Book cover) While aimed primarily at parents, professionals in fields supporting teenagers with PWS will also find it a useful guide.

SC/PRA WAT [P13272]