Aniridia

It’s completely understandable to be upset when you or your child is diagnosed with aniridia. For a child, it may be difficult to predict to what extent their vision might be affected in the long term. You may find yourself worrying about the future and how you or your child will cope. You may find yourself wondering how aniridia will affect education or employment. You might wonder what future opportunities will be impacted for you or your child.

It can sometimes be helpful to talk about how you are feeling with someone outside of your circle of friends or family. At RNIB, we can help with our Counselling and Wellbeing team. Your GP or social worker may also find a counsellor for you if you feel this might help.

With the right help and support, individuals with aniridia can lead full and positive lives.

You may think of further questions about aniridia on your way home from hospital or in the days and weeks following your diagnosis. There is someone to turn to with these questions. Your eye clinic may have a sight loss advisor working alongside the doctors and nursing staff. This advisor may be known as either the Eye Care Liaison Officer (ECLO), the Vision Support Officer or the Early Intervention Support Officer. They are on hand within your hospital to provide you with further practical and emotional support about eye health. To find out if your hospital eye clinic has an ECLO, you can ask at the clinic or call our Helpline.

Alternatively, you can call our Helpline to speak to our advisors within our Eye Health Information Service, as they would be happy to discuss any questions you may have. 

How much aniridia can affect vision can vary from person to person. For a baby or young child, it may be hard to tell what effect aniridia will have on their sight until they’re older and are able to say more accurately how well they can see.

Some people with aniridia may have focusing problems that aren’t caused by the aniridia itself, such as being short-sighted or long-sighted. Their optometrist (optician) may advise that they need to wear glasses. Although glasses and contact lenses cannot improve any sight problems that are caused by aniridia, it’s important for children to have any focusing problems corrected to allow their sight to develop as fully as possible.

You may find some tasks are made easier by making things bigger and bolder. Using contrasting colours can also help to make some things stand out. An example of this could be making the edges of steps stand out using contrasting colours. When you have aniridia, you’ll be more comfortable if your environment causes you minimal glare. This can involve the lighting around you and the devices you’re using as well as using sunglasses or eye shields to control the light entering the eyes.

Low vision aids, such as magnifiers can help with reading. Tinted glasses may be useful to control glare. A low vision assessment will look at using these types of aids and explore which ones may help.

A low vision assessment might be appropriate if you are struggling with detailed visual tasks. You can ask your ophthalmologist, optometrist or GP about low vision aids and whether having a low vision assessment is appropriate for you. During this assessment with a low vision specialist, you’ll be able to discuss the use of magnifiers and aids to help you to see things more clearly.

Having the right support at an early age can make a big difference to children with sight loss relating to aniridia. Your local authority (LA) should have at least one qualified teacher of children and young people with vision impairment (QTVI) to work with you and your child both at home and at school. A QTVI is a qualified teacher who can provide support with development, play, and education. At an early stage, ask your local authority to put you in contact with a QTVI They will support you and your child as soon as a visual impairment is suspected or diagnosed.

You can find out more about the practical help we can offer children, young people and families from our website Parenting a child with a vision impairment | RNIB | RNIB or by calling our Helpline on 0303 123 9999.

If you have sight loss, you may be worried about finding work or staying in your job. Our employment advisors can provide specialist support and advice about employment for people with sight loss. You can contact this team via our Helpline on 0303 123 9999.

There is also technology available that can help with low vision. Many smart phones and tablets are already equipped with in-built software that can be helpful. This can enable people with low vision to access information. There are also specific apps and low vision devices that may help too. Computer software programmes are available that can also be installed. Our Digital Skills advisors would be happy to chat to you about the assistive technology that is available. You can get in touch with this team by calling our Helpline on 0303 123 9999.

Your local social services should also be able to offer local support if you have low vision. They can provide support with staying safe in your home and getting out and about safely.

You can ask your ophthalmologist whether you or your child are eligible to register as sight impaired (SI, previously referred to as partially sighted) or severely sight impaired (SSI, previously referred to as blind). Eligibility will depend on how much sight has been affected by aniridia. Registration can act as a passport to help from social services and sometimes to financial concessions.  Even if you or your child aren’t registered, a lot of this support is still available to you.