Publications available from the PWSA (UK)
NEW! 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.
Copies cost £6. Click on the link on the right for an order form.
Healthy Eating and PWS
The first part of this 56 page 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.
Copies cost £5. Please send cheque or postal order for that amount, made payable to "PWSA (UK)" to: PWSA (UK), 125a London Road, Derby DE1 2QQ.
Overseas orders All overseas orders, including Republic of Ireland (and including from parents of newly diagnosed children) - £7.50 per copy. Please send a bankers draft for that amount (in sterling only please), made payable to "PWSA (UK)" to: PWSA (UK), 125a London Road, Derby DE1 2QQ, England.
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.
If you live in the UK and have just had a child diagnosed with PWS, you can order your FREE copy by emailing jwaters@pwsa.co.uk The cost to professionals and others is £3.50 per copy, including postage and packing. Please send cheque or postal order for that amount, made payable to "PWSA (UK)" to: PWSA (UK), 125a London Road, Derby DE1 2QQ.
Overseas orders All overseas orders, including Republic of Ireland (and including from parents of newly diagnosed children) - £6.50 per copy. Please send a bankers draft for that amount (in sterling only please), made payable to "PWSA (UK)" to: PWSA (UK), 125a London Road, Derby DE1 2QQ, England.
- 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
If you live in the UK and have just had a child diagnosed with PWS, you can order your FREE copy by emailing jwaters@pwsa.co.uk The cost to professionals and others is £5.00 copy, including postage and packing. Please send cheque or postal order for that amount, made payable to "PWSA (UK)" to: PWSA (UK), 125a London Road, Derby DE1 2QQ.
Overseas orders All overseas orders, including Republic of Ireland (and including from parents of newly diagnosed children) - £8.00 per copy. Please send a bankers draft for that amount (in sterling only please), made payable to "PWSA (UK)" to: PWSA (UK), 125a London Road, Derby DE1 2QQ, England.
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.
In the UK, £6.00 per copy, including postage and packing. Please send cheque or postal order for that amount, made payable to "PWSA (UK)" to: PWSA (UK), 125a London Road, Derby DE1 2QQ.
Overseas orders All overseas orders, including Republic of Ireland - ?9.00 per copy. Please send a bankers draft for that amount (in sterling only please), made payable to "PWSA (UK)" to: PWSA (UK), 125a London Road, Derby DE1 2QQ, England
Beyond the Veneer: A guide to the essential features of residential care and supported living for adults with Prader-Willi Syndrome
Adults with PWS have a unique set of needs which are not readily met under existing health and social services arrangements. The syndrome is poorly understood by those who have had little experience of daily living with PWS, and its effects are sometimes fatally underestimated. Hidden risk factors and disabilities lie beyond the veneer of independent living skills and intellectual ability presented by many people with PWS.
However, people with PWS have many skills and qualities which they can use to enrich the community in which they live, providing they have the degree of support, understanding and care they need. This 48 page A4 guide sets out to identify those needs, 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.
In the UK, £5.00 per copy, including postage and packing. Please send cheque or postal order for that amount, made payable to "PWSA (UK)" to: PWSA (UK), 125a London Road, Derby DE1 2QQ.
Overseas orders All overseas orders, including Republic of Ireland - £9.00 per copy. Please send a bankers draft for that amount (in sterling only please), made payable to "PWSA (UK)" to: PWSA (UK), 125a London Road, Derby DE1 2QQ, England
For other publications: Click on the link below for a PDF copy of our order form. Sorry, you cannot order online. Please print off the order form and send with payment to the address on the order form.
PDF reader is available free from www.adobe.com
