This pocket-sized booklet has been written by medical specialists and contains information that you or other professionals may need to know in an emergency.
Translated into many different languages: Arabic, Chinese, Croatian, French, Greek, Hungarian, Italian, Latvian, Portuguese, Romanian, Russian, Slovenian, Spanish, Swedish, Turkish.
Publications
Prader-Willi Syndrome & the Younger Child
This booklet has been written by parents and professionals specifically about the younger years of childhood. Parent-friendly, the booklet can be downloaded, or a hard copy requested. Topics covered include an overview, early infancy, birth to 6 months, feeding your baby, growth hormone treatment, helping your child develop, school years, sociability, practical interventions at school, avoiding obesity, behaviour management, and taking care of yourself.
Exercise & Physical Activity for Children with Prader-Willi Syndrome - a guide for parents and carers
Written by Kirsty Reid and Peter SW Davies and published by the University of Queensland, this booklet answers questions like: "How long does it take to burn off some of the common foods that we eat?" and "How do I encourage my preschool child to exercise?" and many more. This booklet can be downloaded here.
Need to Know Nutrition for children with Prader-Willi Syndrome - a guide for parents and carers
Written by Professor Peter SW Davies, Helen d'Emden, and co-authored by Brigid Knight, and published by The University of Queensland. This booklet covers how diet will change as the child develops, what the difference between the body composition of a child with obesity and a child with PWS and goes from early infancy to young teens covering the keys to success with dietary management. This booklet can be downloaded here.
Our Family Care Committee has published a range of "GUIDE TO..." pages which have been written by parents for parents, and had the input of professionals as well. Many translations have been made of these resources:
Guide for a Health Checklist
The basics of a healthy adult life for someone with Prader-Willi Syndrome (PWS) include a healthy, appropriate eating plan and regular, effective physical activity to avoid obesity, to keep the body fit and to maintain good mental health. Before any of these can be achieved the people working with the person who has PWS must have a good understanding of the complexities of the syndrome.
This “checklist” is to assist you in maintaining good health for your person with PWS. It is to be shared with other family members, professionals and caregivers who are involved with your person with PWS. (Read more in the following languages)
English - Spanish - Italian - German - Dutch - Arabic - Russian
A Guide to PWS Awareness for Professionals
People with Prader-Willi Syndrome (PWS) often present as cooperative, knowledgeable and highly capable of making their own decisions. They appreciate responsibility and respect. Adults with PWS, who are intellectually able, usually resent the fact that parents or other family members want to accompany them to appointments with professionals involved in their health care or life matters.
This can create much frustration for parents and families as well as the professionals. It can also lead to misleading information being received and incorrect action being taken on the part of the professional.... (read more in the following languages)
A Guide for when your child states: "I want the same!"
How do you answer your person with PWS, who asks why they can’t have the same or do “the same” as other people? The “same” includes many more things than just food. People with PWS want to travel independently as do other adolescents and adults. Once someone with PWS learns how to reach a destination they can usually repeat the journey alone, without getting lost and are, consequently, considered to be good at “travel training” - so what’s the problem? (Read more in the following languages)
English - Spanish - Italian - Dutch
A Guide to Coping with Change
Most people with Prader-Willi syndrome (PWS) have difficulty coping with change. This varies from person to person and can be a real problem for those families affected. Change can be anything from a substitute teacher at school, to a different route being taken in a car trip or a new cup being used. Change can also occur suddenly and unexpectedly, as in an electrical blackout. A bad reaction to change may result in the person with PWS refusing to comply with requests, routines or plans and can quickly escalate into perseveration (repeated questions or comments), arguments and aggression. “Shutdown” is another typical response to the anxiety associated with change. These responses can be stressful for families as they often occur at the most inconvenient times. (Read more in the following languages)
English - Spanish - Italian - German - Dutch
A Guide to Confabulation (story-telling in PWS)
What exactly is ‘confabulation’? It is defined by dictionaries as: a memory disturbance, defined as the production of fabricated, distorted or misinterpreted memories about oneself or the world, without the conscious intention to deceive.
Confabulation is different from lying as the person is fabricating stories that he or she genuinely believes in, and believes that you, too, should also believe what they are saying. They are often coherent, consistent, and the stories are relatively ‘normal’. The information produced in these stories is generally false, or made up from incorrect memories, either of the person’s own, or from what they may have heard or read or seen. Confabulation can range from subtle alterations of a story, to quite bizarre fabrications. (Read more in the following languages)
English - Spanish - Italian - German - Dutch
A Guide to managing Skin-picking
Skin picking or scratching is a common behaviour seen in people with Prader-Willi Syndrome (PWS). The intensity and duration of this behaviour varies from person to person and episode to episode. It may occur in the form of scratching an insect bite until it bleeds and becomes an infected sore or it may manifest in the form of nose picking or anal picking. When this behaviour continues for a prolonged period it can cause unsightly and distressing open wounds. 75% of the people surveyed by FamCare reported skin picking in their relative with PWS. A USA study reported anal picking in 9.5 % of people who skin picked. (Read more in the following languages)
Guide to Managing a Meltdown
Most people with Prader-Willi Syndrome (PWS) have meltdowns from time to time. This varies from person to person and is a serious problem for those families affected. The levels of anxiety seen in people with PWS cannot be understated. Most of the difficult, anti social behaviour demonstrated by people with PWS can be related to their inability to express and/or deal with anxiety or emotions they are feeling. They can be upset by something we would just take for granted, or it could be over something that occurred yesterday or last week, as well as something that may have just occurred but has not yet even acknowledged by others. It is often “either all or nothing”. They may become highly anxious about a particular meal being served slightly differently and they may show minimal emotion when a family member dies. (Read more in the following languages)
English - Spanish - Italian - German - Dutch
A Guide to Setting Boundaries
People with PWS have a heightened anxiety and need others to set consistent and consistently enforced guidelines or boundaries for them to feel safe and respond appropriately to what is going on around them. Boundaries include positive behaviour strategies through the encouragement of desired behaviour rather than the punishment of undesired behaviour. Boundaries teach the person with PWS what is desired by you and society and how to communicate effectively. Anything taught must be simply stated, understandable and reinforced in a consistent manner to minimise anxiety. (Read more in the following languages)
A Guide to your Duty of Care
When you have a son or daughter with Prader-Willi Syndrome(PWS) who continues to live in the family home, your parental duties do not reduce as your person with PWS progresses through the different stages of life. This can be very tiring and impact on you and your whole family. Caring for an adult with PWS means you rarely have time to relax and feel that all is well. People with disabilities are as much a part of society as anyone else and you, as parents or family members, have the right to expect and advocate for their needs to be met. This means seeking the best possible workplace, respite care or day support for your family member. A major difficulty with most service providers is their keenness to promote independence for individuals will often include options that are inappropriate for people with PWS, despite the fact that the person with PWS may try to convince those supporting him/her,otherwise.
A Guide to Promoting Positive Behaviour
Some people with Prader-Willi Syndrome (PWS) engage in inappropriate behaviour from time to time. This varies from person to person and can cause problems for the person with PWS, their families and the community. It also has the potential to limit opportunities to socialise with friends and isolate or cause embarrassment for members of the family.
This article is concentrating on behaviour that is not causing any direct physical harm but is not generally acceptable in a public place or at the specific location where it is occurring. It is generally the type of behaviour that would cause discomfort or embarrassment to those around the person at the time and is likely to draw unwanted attention to the person exhibiting the behaviour and those around them such as family members or friends.