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• What is Usher syndrome?
• 'Everything is so complicated...'
• Getting on with it
• Help and info
Lindsey Truss was 11 when she realised she was different. Her mates would play around in the boarding school dormitory after 'lights out' and she couldn't work it out. After all, if she couldn't see in the dark, how could they?
What Lindsey didn't know then was that she had retinitis pigmentosa, known as Usher syndrome when it's combined with deafness.
Usher affects the retina at the back of the eye, which is made of nerve cells and light-sensitive cells. The retina converts light into electrical signals, which go to the brain where 'seeing' happens. With Usher, the nerve cells get less efficient over time. How quickly this happens depends on whether you have type 1, 2 or 3.
The first thing people might notice is poor vision in the dark, as Lindsey did. But it's possible to have blindness in bright light too. Next, you might notice 'tunnel vision', if the cells around the edge of the retina are the first to be affected. But this varies: if the cone cells in the centre are affected first, your vision of brightly coloured detail starts to get worse.
Most people first realise they have Usher when they're a young adult, especially with type 2 or 3. It's also possible to be born with the condition. Sometimes tests assessing suitability for a cochlear implant can uncover Usher at an early age.
Being diagnosed can be devastating. On the website of the organisation for deafblind people, Sense, Nicola Henderson says:
'I was shocked, angry and tried to find someone to blame. My life seemed to be going nowhere and I didn't want to talk to anyone as I felt so much resentment towards their happy, problem-free lives.'
Teenagers have a lot to deal with without the additional problems of Usher – such as embarrassing moments bumping into things and not being able to go out at night. Lisa Hoya, who has Usher 2, told Sense: 'As a teenager I could never see at night. You can't just say "I'll meet you in the pub" because you need someone to take you there, or to get a taxi. Everything is so complicated...'
Difficulties with understanding your friends can add to the confusion and upset. 'It's so easy to miss the joke, miss the moment,' says Lisa. 'People with Usher 2 can't lip-read in the dark.'
What about learning to drive? Nearly every teenager longs for the day they pass their test and get independence. But if you've got Usher you might not be allowed to take the test. 'It's my independence they're taking away,' says Nicola. 'It's upsetting, as it makes me feel I am pressurising other people to help – although they don't mind.'
But people with Usher can still be positive and live active lives. For Lindsey, walking her dog and shopping are no problem. She also plays football. She says that close friends support her '100%'.
Nicola doesn't stay in either. She told Sense: 'I go out at weekends, usually with my sister Georgina or my best friend Gemma. A lot of bars and restaurants have stairs but Georgina makes sure I'm behind her and puts my arm on her shoulder so I know when to step up or down. All my sisters and Gemma are great and sign really well.'
This week on VEE-TV Lindsey, Nicola and James Clarke, youth co- ordinator at Usher UK, a support group run by people with Usher, talk to VEE-TV about their lives and looking to the future.
Lindsey works in a riding stable teaching disabled people and takes part in Sense's Peer Mentoring project too. Mentoring brings Usher people together so they can discuss problems or experiences. Each person is assigned a mentor who will act as a friend, with regular meetings and e-mails.
'I went to a family day with Sense, where they taught me how to cope and deal with my Usher,' Lindsey tells VEE-TV. 'After this I felt I wanted to do more to help people with Usher, so my mum took me to a three-day mentoring training course and I loved it.
'Mentoring is a voluntary job but I love it and I want to encourage more people with Usher to come out more to build their confidence. Some people can't cope and hide away but I want to help them.'
James explains that sometimes people are given mixed messages. 'People used to say: "Don't worry about the future; think about the present; be positive," he says. 'But then others were telling me to plan for my future, my home, my job, because my choices would be limited. And these are the arguments.
'I would love to be a teacher but it could create more frustration for Deaf students. I think I have a very limited choice. But what's funny is I'm proud of myself, as I still want to accomplish all my goals. I completed the London Marathon once, am with the Ramblers Deaf club, and have been to Anfield to watch Liverpool FC in every home game this season – on my own.'
Nicola told Sense: 'I've learned to cope with Usher and now, if anyone says anything to upset me, I laugh and walk away. I'm not the blind one ...'
This website contains links to other websites that are not under the control of and are not maintained by Channel 4 Television. Channel 4 Television is not responsible for the content of these sites and does not necessarily endorse the material on them.
British Retinitis Pigmentosa Society
www.brps.demon.co.uk
Aims to provide a better understanding of retinitis pigmentosa (RP),
macular degeneration, Usher syndrome and other allied retinal dystrophies.
Also includes information on events happening and an RP e- mail forum.
Deafblind UK
100 Bridge Street
Peterborough
Cambridgeshire PE1 1DY
Voice: 01733 358100
Fax: 01733 358356
Text: 01733 358858
E-mail: info@deafblind.org.uk
Website: www.deafblind.org.uk
Aims to assist deafblind or dual sensory-impaired people to cope with
their disability and to lead fulfilled and independent lives.
Sense
11-13 Clifton Terrace
Finsbury Park
London N4 3SR
Voice: 020 7272 7774
Fax: 020 7272 6012
Website: www.sense.org.uk
Offers a wide range of specialist services across the UK to help sensory-
impaired people of all ages to reach their full potential. These include
family support, advice and services for Social Services staff. Also campaigns
and lobbies government and local authorities to promote the interests
of sensory- impaired people and their families.
Usher UK
PO Box 93
Gosport
Hampshire PO13 0FA
Fax: 020 8645 0322
E-mail: info@usheruk.org.uk
Website: www.usheruk.org.uk
Voluntary group run mainly by people with Usher to promote the interests,
needs, welfare and wellbeing of all people who have Usher, and their partners,
their families and friends. Usher UK is a branch of Sense.
Graphic version
Includes layout and images.