Usher Syndrome

Overview & Synopsis

Few books for health and social care students, professionals and practitioners are written by the very people impacted by a condition. Usher syndrome is a diverse collection of types, subtypes and complexities. It has been called ‘a life of adjustments’, and this book unpacks these and explains how you can help support and communicate with us and others who live with Usher syndrome. The three authors all have lived experience, expertise and knowledge of life with Usher syndrome for individuals, parents, families, partners, siblings and supporters. Lived experiences inform and imbue each chapter. The lived expertise that comes from being clinicians, colleagues, researchers, peer supports, advocates, parents of and parents with Usher syndrome directs content to reflect what the community wants you, the reader, to know about Usher: the basics, the genetics, diagnoses, diversity, extended family impacts, life-long adjustments, downsides and upsides. We give the reader blueprints for better communication, better health and well-being and solutions for every day. Usher syndrome is complex and challenging, but we are capable contributors when well supported. This book is strong evidence of this.