Living with Usher syndrome Usher syndrome is one of the most challenging disabilities that anyone can face. People with Usher are born deaf or hard of hearing, then gradually start to lose sight in late childhood. 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 a job, find a partner and enjoy their leisure - just like anyone else. What is Usher syndrome? Usher syndrome is the name given to a range of genetic conditions which cause deafness or partial hearing from birth, and sight loss over a number of years. This sight loss often begins in late childhood and is caused by an eye condition known as Retinis Pigmentosa (RP). Early symptoms of RP include difficulty in seeing in the dark and in different lighting conditions. Over time, vision gradually deteriorates until tunnel vision develops - although this does vary from person to person. James Clark: - "It's so important not to let disability stop you from achieving your goals" How is it passed on? Usher syndrome is an inherited condition which is passed by both parents. It is possible to be a carrier of Usher syndrome but to be unaffected by the symptoms. Often parents are unaware that they are carriers until their child is diagnosed as having the condition. For a child to be born with Usher syndrome, both parents must either be carriers of the same faulty genes, or have the same type of Usher syndrome themselves. Jeremy Morgan - "They gave me a chance to prove myself" The challenge When someone discovers they have Usher syndrome the news can be devastating. Many people do not realise they have the condition until they are teenagers and 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. As their field of vision deteriorates, people with Usher syndrome can feel isolated, not just from the hearing, sighted world, but also from their deaf friends. They often experience communication problems as it becomes increasingly difficult to see sign language, or to lipread. Some may have poor balance which can severely restrict their freedom to move around safely. Bethany Fanthom: - "I like going really fast!" Learning new skills With the right training and support, people with Usher syndrome can be taught to minimise the effects of their new disability. And they can learn new skills which will help them to cope with life when their sight gets worse Many people born deaf with Usher will have learned to use British Sign Language to communicate. As their sight narrows they will still be able to use and understand sign, provided people sign to them within their remaining visual field. When this remaining vision fails people may then use tactile, or hands-on signing, by placing their hands over the hands of the signer so that they can feel the signs being used. People born partial hearing with Usher will usually continue to use speech to express themselves. Some may learn finger-spelling and signing to receive communication. Debbie Arnaud: "Being a mum is demanding - but so rewarding" How Sense helps Sense helps people with Usher syndrome to live as full a life as possible. It also supports their families, carers and the professional they work with them. Services include: providing advice and support to people with Usher and their families - particularly when the condition is first diagnosed. mentoring - a scheme which trains people with Usher to support individuals who have the condition. offering information to people with Usher syndrome, families and professionals about practical ways to get the most out of life. Training education, health and social services professionals to understand Usher syndrome and its effects. Janet Brown - "We are campaigning to raise awareness about Usher" Usher people are doing it for themselves As the confidence of people with Usher has increased, a strong self-help network has grown up across the country - with people coming together for support, information and fun! Usher UK is a branch of Sense run by Usher people themselves, and there is a `Hearing and Sight Impaired' group for people with partial hearing. Getting in touch If you would like to find out more about Usher syndrome, or the services that Sense offers, please contact: Sense 101 Pentonville Road London N1 9LG Tel: 0845 127 0066 Text: 0845 127 0066 Email: info@sense.org.uk Website: www.sense.org.uk/Usher