Frequently asked questions

Inherited retinal conditions affect roughly one in every 3,000 – 4,000 in the world. In the UK it is estimated that some 25,000 people are affected. The global total is estimated at approximately two million people affected.

Do not panic and make quick decisions, especially regarding your present employment. We recommend you seek advice first, remembering that some forms of inherited sight loss have a slow progression. It may be possible to continue working at your present job, although some modifications to the work environment may be necessary. If it is found to be impossible to continue with your present job, first seek advice through the Retina UK Helpline or speak to the Disability Employment Advisor at your local Job centre. The Disability Employment Advisor, who works as part of the Placement Advisory and Counselling Team will be able to advise you.

In the early stages of inherited sight loss, many people manage to get about with little or no help, especially in daylight hours. It is likely that some difficulties will be experienced in the dark however, or in poorly lit surroundings. If you are beginning to find getting about stressful, it is probably the right time to seek advice on some form of mobility training, either with the use of a mobility cane or a guide dog. With proper training and support, the majority of problems will be overcome.

Inherited sight loss does not automatically mean a career is cut short. We know of many people with inherited sight loss pursuing successful careers in such fields as law, management, sales education, architecture, banking, hotel catering, computing and others. Seek advice from Disability Employment Advisor at your local job centre about special training and rehabilitation courses.

Yes, a great deal can be done by careful choice of lighting, colours, contrasts, textures and labelling. Simply moving furniture around can make navigating your home easier, and organising cupboards and drawers methodically. Teaching your family to be tidy and to keep floors and surfaces clear can also help. Special attention should be paid to safety in the home and there are lots of aids available to help with cooking, gardening and DIY. Information is available from RNIB , local Social Services, the Retina UK Helpline.

This does not need to be the case; many people with sight loss enjoy a variety of sports and leisure activities. Organisations such as British Blind Sport  can be of help and services such as Talking Newspapers  and Calibre Audio Library. Local sight loss organisations can also advise of leisure and recreational activities in your area; check out the Visionary directory of societies and charities close to you

There are a number of factors which might account for changes in your vision from day to day, including the ups and downs of general health. Tiredness or emotional stress can have a bearing on your eyes’ capabilities. Variability in ambient lighting can also significantly affect vision. Some people appear to see better on cloudy or dull days and others simply find being in environments decorated in particular shades or a lack of contrast affect how well they can see.

When planning a family you may wish to seek expert genetic counselling. Ask your consultant or Eye Clinic Liaison Officer for advice or request that your GP refer you for genetic counselling. Based upon your own family history and eye condition, they will be able to advise you on the probability of your child having inherited sight loss. Some people with inherited sight loss choose not have children to avoid passing on the genes that cause it. Others take the decision to have children – it is your decision how you proceed but we recommend you speak with healthcare professionals and your consultant so you can be fully informed.

There is no simple answer to this question. Children have varying needs depending on their age and maturity. Answer questions frankly and positively, not giving more answers than your child has requested. Help them understand their condition but don’t panic and become over protective. You may find it helpful to discuss your experiences with other parents who have faced or are facing a similar situation.

It is a legal requirement to advise the DVLA when you are diagnosed with an inherited sight loss condition even if you have excellent central vision. Unless certain field of vision and distance test requirements can be met, driving must cease. If they are met, the DVLA will still arrange repeat tests at regular intervals, to assess progress.

It appears to depend upon the individual pregnant woman. Some find that they detected no difference whilst others believe that they have detected deterioration in their sight during pregnancy. There is no conclusive evidence either way and tests would be difficult to assess due to the variations experienced by different mothers.

There is minimal chance of such an operation being available in the foreseeable future. The reason is that the eye is connected to the brain by an extremely complex bundle of cell fibres called the optic nerve and the majority of the one million fibres would have to be identified and correctly joined. However, the cornea can now be transplanted and experimental work is progressing on transplanting healthy groups of cells into parts of the retina. In addition, much work is also being done by several groups around the world into artificial vision (often called ‘bionic eyes) with the development of electronic retinal implants (retinal prostheses).

Inherited retinal conditions are a significant cause of blindness in the developed world. They now represent the commonest cause of visual impairment registration in the working age population in the UK. Age-related macular degeneration, which is the commonest cause of blindness in the western world, also has a significant inherited component. Retinal conditions therefore represent a large health and socio-economic problem which is receiving increasing attention.

Information, leaflet and forms regarding eye donation can be found on the Moorfields Eye Hospital website . Alternatively you can call Moorfields Eye Hospital on 020 7253 3411.

Eye Clinic Liaison Officers (ECLOs) work closely with medical and nursing staff in the eye clinic, providing emotional support and practical information at the time most helpful to you.

The role of the ECLO is explained fully at this link.