Usher Syndrome Diagnosis

Coping With A Diagnosis

The time of diagnosis can be difficult, and many different emotions can arise. For some people, it may be quite distressing, upsetting or overwhelming. People often struggle to understand how this has happened and how they will cope now and in the future. If you feel like this, you are not alone. There is no need to feel guilty about these feelings. It is important to find support for your situation and to have a way to express your feelings and thoughts.

The initial feelings that people experience after a diagnosis can include shock, denial and despair. These feelings will lessen as time passes. While it is natural to feel like this after such a life-changing diagnosis, it could help you to talk to a healthcare professional or a counsellor. With the appropriate support and guidance, it is possible to work through and overcome difficulties to find new and life-enhancing meaning and purpose in living.

Some people with sight loss can experience visual hallucinations or see things that are not there. This can be very frightening for people and some fear that they are having mental health problems. However, it is a common condition in people who have recently lost their sight where the brain is adjusting to the loss of visual information. It is called Charles Bonnet syndrome and while it can be distressing, the hallucinations can get less frequent as time passes.

For Parents

If your child has been diagnosed with Usher syndrome, it is important to remember that, despite the diagnosis, your child has not changed. Your child is a person that is much more than the threat of blindness. Children are more aware of things than we give them credit for, and so it is important to be honest and answer their questions truthfully and compassionately. Ideally, a child should be told about their diagnosis in an age-appropriate way by a loving person who is close to them. If a child isn’t told about their diagnosis but then discovers information from sources other than the family, for example overhearing a doctor’s conversation, over time this can foster mistrust and resentment.

There are many supports and outside help available to parents, so that they don’t have to do everything alone. Parents can often feel that they must be the sole doctor and carer and nurse for their child. However, this can be an overwhelming and impossible task. Outside help can support those roles to allow parents to do the very important role of being parents to their child. Please see the member charities of Retina International for a local charity near you: RI Membership

It can be difficult to explain the complexities of vision and vision loss to children. However, there are useful videos designed to introduce children to some of the concepts. Some of these are listed here:

Video 1: The Visual System: How Your Eyes Work


Video 2: Ask a Scientist: Eyes at Night


Video 3: Ask a Scientist: Eye Myths and Facts

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