Usher syndrome is a group of inherited diseases that cause hearing impairment or deafness, combined with visual impairment, and in some cases even balance issues. Children with Usher syndrome are born either deaf or with a hearing impairment that then gradually deteriorates. Everyone with Usher syndrome also has the eye disease retinitis pigmentosa, which causes the retina to slowly degrade.
Although Usher syndrome is rare, people with Usher syndrome make up the biggest group under the collective term deafblindness. The rarity of Usher syndrome can mean that it is difficult for professionals to acquire knowledge about the conditions experienced by those living with the syndrome.
Find out more about Usher syndrome
Everyone with Usher syndrome needs habilitation and rehabilitation, with coordinated vision and hearing initiatives. This is why it is important that the various bodies in society have sufficient knowledge. Adaptations to the environment and technical means of communication facilitate active participation in different contexts.
You can find out more about Usher syndrome from the Swedish National Board of Health and Welfare and the Norwegian NKDB, and also from the USA’s National Eye Institute.
The Swedish National Knowledge Centre for Deafblind Issues (NKCDB) offers a Care Programme for Usher Syndrome, and the Danish Centre for Sensory Impairment has published At være barn og ung med Usher syndrom (Being a young child with Usher syndrome); these are two useful bodies of material for those who encounter people with Usher syndrome in their work.
The Usher Syndrome Coalition works to create collaborations and a forum where people with Usher can share knowledge and get in touch with other people living with the syndrome.
