Usher syndrome is a major cause of deafblindness in adults which affects 3-6% of the people in the UK who were born deaf or partially hearing.
People with Usher have a genetic condition which means they are born deaf or hard of hearing, then gradually start to lose their sight.
The sight loss often begins in late childhood and is caused by an eye condition known as Retinitis Pigmentosa (RP). RP is a disease of the retina. The retina slowly degenerates and loses its ability to transmit pictures to the brain.
The early symptoms include difficulty seeing in the dark and in different lighting conditions. Over time vision gradually deteriorates until tunnel vision develops.
Many people do not realise they have Usher until they begin to have problems with their sight. They will have grown up as deaf or partially hearing, and coming to terms with losing their sight as well can be very hard.
But despite the enormous challenges this brings, people with Usher can achieve remarkable things. With the right support many people can go to college, get jobs, find a partner and enjoy their leisure.
Sense provides advice and support to people with Usher and their families - particularly when the condition is first diagnosed. Click here for Sense's contact details.
