Conditions & syndromes · England
Understanding Usher syndrome
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Usher syndrome affects hearing and sight.
It affects people in different ways.
What it means
You may find it harder to hear or see.
Seeing in dim light or to the side may be difficult.
Some people also have balance difficulties.
Your hearing or sight may change over time.
Ask a specialist what this could mean for you.
Your health care
Specialists can check your hearing, sight and balance.
A genetics specialist can explain tests and family questions.
Some equipment or treatment may help.
Ask what is suitable for you.
Ask when you need your next check.
Communication that works
Tell people how you want to communicate.
You may need different lighting, more time or another way to share information.
People should check what works for you.
You can ask for help to learn safe routes.
A specialist can explain equipment and support for getting around.
Your interests and goals matter.
Ask for support with learning, work and seeing friends.
Ask about support
You can ask the council about a specialist deafblind assessment.
This looks at how your sight and hearing affect daily life.
Changes can bring difficult feelings.
Sense and Deafblind UK can help you find information and support.
What you can do next
Ask for your hearing and sight needs to be considered together.
Ask for information in a way you can use.
Read Usher information from Sense Web pageThis link opens another website.
It may use harder words.
More useful links
- Sense: Usher syndrome Web page
Information about types, testing, treatment and living with Usher.
- Deafblind UK: Usher support Web page
Specialist information, communication support, technology advice and contact with others.
- Sense: what to expect from your council Web page
How to request a specialist assessment and make information accessible.
- Sense: support for children with combined sensory loss Web page
Advice for families and professionals about learning, communication and independence.
These links open other websites.
They may use harder words.
Usher syndrome
Understand combined hearing and sight loss, changing communication needs, specialist assessments and everyday support.
Children and adults · England · General information
What Usher syndrome means
Usher syndrome is an inherited genetic condition affecting hearing and sight. Sight changes are caused by retinitis pigmentosa, which affects the light-sensitive tissue at the back of the eye. It can make seeing in dim light and noticing things to the side difficult. Some people also have balance difficulties. Deafblindness means combined sight and hearing loss; it does not necessarily mean having no hearing or sight.
Different types and diagnosis
Usher has several types. Type 1 usually involves severe hearing loss from birth and early balance difficulties. Type 2 usually involves hearing loss from birth, with balance generally less affected. In type 3, hearing loss often develops later. Sight changes and their timing vary. Some people do not fit these patterns. Specialists may use hearing, eye, balance and genetic tests. Ask a genetics team to explain results and family implications.
Coordinate hearing and eye care
Ask the GP or existing team about appropriate eye and hearing specialists. Some centres offer combined clinics. Hearing aids, cochlear implants, low-vision aids and treatment for other eye problems may help, depending on individual assessment. Ask who arranges reviews and what changes to report. There is currently no cure for Usher syndrome. Discuss research or treatment claims with the specialist rather than assuming they will restore sight or hearing.
Make communication work for the person
Ask how the person wants to communicate and what lighting, distance or format works best. Options may include speech, sign language, touch-based communication or accessible technology. Introduce yourself, reduce background noise and allow enough time. Do not assume that difficulty accessing spoken or visual information means a learning disability. Communication methods may need to change as sight or hearing changes. Record useful adjustments with the person’s agreement.
Getting around and everyday independence
Ask about orientation and mobility training: learning routes and ways to travel safely. A specialist can assess lighting, the home environment and suitable mobility aids. A trained communicator guide may support communication and getting out. Offer help and ask how to give it; do not grab or steer someone without agreement. Plan around the person’s chosen activities, travel and independence, with review when needs change.
Learning, work and relationships
Support should help the person take part in education, work, friendships and family life. Children may benefit from a teacher who specialises in combined hearing and sight loss. Ask about accessible learning materials, communication support and suitable adjustments. Adults can ask about workplace adjustments and technology. Start with what the person understands, enjoys and wants to do, rather than judging ability from how they hear, see or communicate.
Ask for a specialist assessment in England
Contact the council’s adult social care or sensory team if combined sight and hearing loss affects daily life. Explain the effect on communication, information, mobility and wellbeing. Adults who are deafblind should have a specialist assessment involving appropriately trained staff. The assessment should consider current and likely future needs. Ask for a copy in an accessible format. The support offered depends on assessed needs and eligibility.
Emotional support and planning ahead
Sight or hearing changes can bring uncertainty, frustration or worry. Ask for support with feelings as well as equipment and appointments. Sense and Deafblind UK offer information and practical support, including ways to connect with others. Involve the people you choose. Agree who coordinates care and how support will continue when moving to adult services or another area. Review the plan around your goals.
Words you could use
“Please assess my hearing and sight needs together, use communication that works for me and explain the support available.”
More useful links
- Sense: Usher syndrome Web page
Information about types, testing, treatment and living with Usher.
- Deafblind UK: Usher support Web page
Specialist information, communication support, technology advice and contact with others.
- Sense: what to expect from your council Web page
How to request a specialist assessment and make information accessible.
- Sense: support for children with combined sensory loss Web page
Advice for families and professionals about learning, communication and independence.
These links open other websites.
They may use harder words.
Where the information comes from
Links checked 9 November 2026.
These links open other websites.
They may use harder words.
- Sense: Usher syndrome Web page
Inherited condition involving sight, hearing and sometimes balance.
- Sense: causes and diagnosis Web page
Types, individual variation, hearing and eye investigations, genetic testing and counselling.
- Sense: treatment options Web page
Hearing and vision support, review, specialist care and the current absence of a cure.
- GOSH: dual sensory clinic Web page
An NHS example of combined hearing, vision and balance assessment for children.
- RCSLT: deafblindness and communication Web page
Individual communication, introductions, lighting and reducing background noise.
- Sense: living with Usher Web page
Accessible information, communication preferences, emotional wellbeing and daily support.
- Sense: walking safely with Usher Web page
Mobility assessment, aids, training and lighting needs.
- Department of Health: deafblind guidance Web page
Specialist assessments, accessible information and appropriate local authority services.
- Care and support statutory guidance Web pageFuller information
Paragraphs 6.91–6.97 explain specialist assessment of adults who are deafblind and future needs.
- Deafblind UK: support for people with Usher Web page
Practical and emotional support, communication, employment, technology and social connections.
- Sense: specialists for children with multi-sensory impairments Web page
Individual support for children and families and the meaning of combined sensory loss.