USH2020: Being a Child/Adolescent with Usher Syndrome

July 7, 2020

Bettina Kastrup Pedersen, Institute of Vision, Hearing and Deaf Blindness, Denmark

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Presentation Summary:

Usher syndrome belongs to the rare diseases category and is a syndrome that causes combined vision and hearing loss and, for some, also reduced balance. Usher involves a progressive loss of sensation and is the most frequent cause of acquired deafblindness in children and adolescents in Denmark.

Growing up with a combined sense of loss, which is progressive, can be intrusive in all the environments in which the child and adolescent travel. Such are the realities of children born with Usher syndrome.

This presentation will be an introduction to a pilot project that has resulted in a booklet soon to come. The booklet and its contents are based on a number of consultants' long-standing cooperation with children and adolescents with Usher syndrome and their networks and partly from a recent study.

Speaker Bio:

Bettina Kastrup Pedersen has been working with children and adults with acquired and congenital deaf-blindness for almost 30 years, first as a teacher in a school for deaf children and later as a consultant for 13 years.

She focuses greatly on children with Usher syndrome, specifically their life conditions and families, and has collaborated with networks from many countries in order to gain knowledge, but also to see if the observations done in her work is similar to other countries.

She is a member of DBI's Usher network and has been part of many projects about Usher syndrome and children. She has been kind enough to share her knowledge at several conferences all over the world.

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