This work covers all the aspects of the life of young adults with a rare neurogenetic disorder, the Angelman syndrome. It is still a poorly understood disability, especially with regard to adults, many of whom have never been diagnosed or have been diagnosed belatedly.
Sparkling personalities often jovial and exuberant, they involve their parents, caregivers, educators and specialists in an enigmatic situation on which this work attempts to cast a new light. However, the universe which is described is often less than joyous, it is often hard for everyone, “full of sound and fury” with episodes of difference, indifference, rejection and violence.
This book raises questions as to the attitude of society to victims of Angelman syndrome as it has questioned the many specialists who have contributed their valuable contributions to the reflections of those whose parental role has made them unwitting experts in a field they never expected to explore.
Odile Piquerez was a personnel officer until she interrupted her career to look after her son, now 33 years old. She is involved in many associations which support handicapped people in fields such as accessibility, epilepsy, and care.
The authors have founded the association Syndrome Angelman-France (WWW.syndromeangelman-france.org) They intend to translate extracts of the book into English and progressively to make their association’s website available in other languages.
Syndrome Angelman France is an association created nationally for those families and friends of people who have the care of SAF. The administration of SAF is composed of families as well as professionals from the medical, paramedical and medico-social world. The functioning of SAF is totally assured by voluntary workers.
What does the S.A.F. Association propose:
– Enchance the expertise of parents in organizing and facilitating the dissemination of information and sharing experiences. This is why a website magazine has been created and managed ( www.syndromeangelman-france.org ) This site is interactive , collaborative, and has a regular and consistent link with families spread over the five continents.
– Be a resource center for families having someone with this disability in society.
– Deepen reflection on their own disability of mental handicap and thus contribute to others a view on this difference.
– Publicize the Angelman syndrome.
– Encourage and help the research by informing and sensibilizing medical, paramedical, social and medico-social groups on traditional and innovative educational methods adapted to the Angelman syndrome.
Two SAF actions:
A BOOK TO READ: “Angelman Syndrome – A look on a rare neurogenetic disease”.
This book is published by Editions H. prefaced by Professor DAN and written by Anne Castle. Anne is the mother of a young adult Angelman and Vice-president of the Syndrome Angelman France association.
Collection Sciences et Société – Editions L’Harmattan
BUY TODAY WITH THIS LINK:
A lire : Le SA, Regard sur une maladie neurogénétique rare, un livre publié aux éditions H, préfacé par le Pr DAN et écrit par Anne Château, maman d’un jeune adulte A et Vice-présidente de l’association SAF
Syndrome Angelman France