Sense started working with people with Usher in 1983, and our knowledge has grown enormously since then. Typically their vision starts to change in the first and second decade of life, with tunnel vision and nightblindness often being the first symptoms. Babies who have Usher have poor balance. People with Usher 2 are born partially hearing, are often hearing aid users, and will have probably grown up as part of the 'hearing' community. Again, vision often starts to deteriorate during the teenage years.
Balance is unaffected.
People with Usher 3 may have normal hearing from birth, but develop Retinitis Pigmentosa in adolescence or later when hearing loss also occurs. Since Sense started offering support to people with Usher the profile of people it helps has changed. At first, most of the referrals it received were from people with Usher 1 and their families. Also, as a result of improved diagnosis and awareness amongst doctors, children with Usher syndrome are being identified much earlier. While it will certainly be a hard blow for families to hear this news, it does mean that planning for the child's future can be carried out much more effectively.