Managing Usher syndrome

Early identification of Usher syndrome is important so that you can get the support you need to manage your condition and live a full, happy and independent life.

While there are currently no available treatments to prevent, cure or slow the progression of Usher syndrome, there is a wide range of emotional and practical support that can help you identify and manage your condition.

Support from your local authority

If you have a combined sight and hearing impairment you are entitled to an assessment under the Department of Health’s Deafblind Guidance.

This assessment may lead to you receiving some or all of the following support:

  • Orientation and mobility training. 
  • Help to learn new communication methods, such as British Sign Language (BSL).
  • One-to-one support, for example a communicator guide, who can help you with everyday tasks, to get around and maintain your independence.
  • Hearing and vision aids.
  • Other assistive technology.

Managing your condition

Nutrition

The NHS has lots of information about eating healthily, explaining how to get the balance right and what foods to avoid.

Being overweight does not directly affect any particular eye or hearing condition, but it does put you at risk of other health problems, such as high blood pressure, type 2 diabetes, heart disease and some cancers.

These problems could lead to eye conditions such as glaucoma and cataracts, which affect your sight.

Annual eye tests

Regular eye check-ups are important to monitor any changes in your vision. They will also help to detect any further complications, such as cataracts.

Vitamin A and fish oil supplements

There are claims that vitamin A supplements and/or fish oil supplements can slow the progression of retinitis pigmentosa (RP). These are from a single trial in the USA in 1993, but unfortunately nobody has replicated this test in true randomised control trials.

While vitamin A and oily fish have health benefits in the natural quantities found in certain foods, supplements can be dangerous for people under 18, pregnant women and women considering pregnancy. We recommend that you discuss the use of either supplement with your GP first.

Vitamin E supplements

There is research that suggests the use of vitamin E supplements may actually speed up the deterioration of eyesight of people with RP. Therefore, we strongly recommend that you do not take vitamin E supplements.

Smoking

Smoking can damage the eye tissue and should be avoided. It may not contribute to RP, but it doubles the likelihood of developing age-related macular degeneration, jeopardising any remaining sight.

Eye safety in the sun

UVA and UVB rays can harm your eyes and increase the risk of cataracts and age-related macular degeneration. Wearing sunglasses or glasses with a built-in UV filter will protect your eyes. You should only use sunglasses that have a CE mark or carry British Standard BSEN 1836:1997.

Sense and the National Deaf Children’s Society have published information and guidance for families and professionals about looking after the sight and hearing of children

Contact the Sense Usher Service

The Sense Usher Service specialises in Usher syndrome and can support you and your family.

Contact us on info@sense.org.uk or usher@sense.org.uk for more information. You can also follow us on Facebook

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