DLAN is pleased to announce that the Erasmus+ Cross-Cultural Project on Deafblindness has published a translation of a Danish book entitled Being a Child or Adolescent with Usher Syndrome. The book describes Usher syndrome from the perspective of children and adolescents. Usher syndrome is a rare syndrome that causes simultaneous visual and hearing impairment and, in some cases, balance problems. It is the most common cause of acquired deafblindness in children and adolescents. The researchers were inspired by the findings of the project “Usher syndrome and psychological vulnerability”, which interviewed seven children and adolescents with Usher syndrome aged between 13 and 27 years, as well as by practical experience and information provided in the literature and in previous publications. The book answers the important question; what does it mean to be a child or adolescent with Usher syndrome? What are the challenges they face and what are the key messages that the network of people around them need to be aware of? The information gathered in the project focuses attention on how best to provide counselling to support children and adolescents with simultaneous sensory impairment to cope with challenges and gain tools to deal with barriers in their daily lives.
The book is available free of charge at the Deafblind Association of Slovenian DLAN.
