Children and young people

Published: 3 April 2023

Some people are unaware they are affected by an inherited sight loss condition until adulthood, others may be diagnosed as children.

The concerns felt by a child or young person may be different to that of an adult. Depending on when a diagnosis is given, it might affect choices in education and training and early career paths. Our Helpline or our Frequently Asked Questions pages may be helpful when planning to discuss a diagnosis with a child or young person.

Parents of children and young people

In some cases, parents may be affected symptomatically by an inherited sight loss condition themselves, and be familiar with the condition, diagnosis and terminology of sight loss. Those that aren’t might find contacting the Retina UK Helpline helpful.

Some parents feel guilt following diagnosis of inherited sight loss in a child – in many cases parents don’t realise they are carriers of a condition and it comes as a shock when their child is affected. Talking about these feelings can be helpful for some, and if you are struggling with this issue you can call the Retina UK Helpline for support or speak with your GP or a specialist counsellor.

It’s perfectly normal for a range of emotions to be felt following a child or young person’s diagnosis, and for there to be concerns about their future. The team on our helpline are there to provide a listening ear and offer emotional support and signposting to additional services. It may also be helpful to speak with an ECLO (Eye Clinic Liaison Officer) at your local eye hospital who can spend time with you explaining your child’s diagnosis and advising next steps and what practical, local support is available. Retina UK and other charities can help with information and support when parents feel ready to access further information (see below).

Explaining a diagnosis to a child

Depending on the age and understanding of a child, they may not be present when parents are given a diagnosis of inherited sight loss by a consultant.

There is often a wish to protect children from something they may find distressing, and it is up to the parents of children affected by inherited sight loss to decide what information to share with them. It is not unusual for parents to want to delay telling children about their condition and to feel it is something that should wait until they are older. It can be helpful however to tell a child early on about their condition, and allow them to grow with it.

A risk of not telling a child about their condition until later in life is they may overhear conversations among other family members, read letters or information about their condition in the family home or suspect something is being kept from them and be concerned, making incorrect assumptions about their future.

Any explanations of conditions given to children must be done in a way that is appropriate to their age. If parents do not feel able to give the information themselves the consultants, nurses or family support staff in the clinic are always willing to help and advise on this.

Open up a conversation with your child and let them know that it’s OK to talk to you about their condition, their feelings and thoughts about their future. If you are open with your child they will be able to come to you if they have any issues or concerns rather than bottling it up. Download the RNIB leaflet: Tough talks about sight loss.

Older children

Telling an older child or an adolescent may present different challenges to that of a younger child. An older child may have more awareness of the implications of sight loss, and they have already started planning aspects of their education and career.

An older child may choose to undertake their own research about their condition. You should explain to them there is conflicting and sometimes inaccurate information online, and that they should trust their consultant and other healthcare professionals in the first instance.

Some older children and adolescents experience feelings of isolation following diagnosis, particularly from others their age. Parents and other family members should be mindful of this, and watch out for signs the child is withdrawing from their usual activities.

Your consultant and eye clinic support staff will be able to advise how to talk to your child about their diagnosis and the next steps.

Contact our Helpline

Call our Helpline on 0300 111 4000 or

Email the Helpline

Other children in the family

The diagnosis of inherited sight loss in one child can lead to concerns for their siblings. Parents may decide to have their other children tested for inherited sight loss, or a consultant may suggest it. In some cases however, due to the inheritance type, this may not be necessary. Your consultant can advise whether others in the family should consider an eye examination.

The wellbeing of siblings of the diagnosed child should be considered too, even if they are unaffected by the condition. They may feel concern for their brother or sister, have questions or concerns about whether they might be affected by the condition themselves or, in some cases, feel left out by the attention their sibling is receiving.

Talking about the condition as a family is helpful, as is being open about the impact this may have on certain aspects of family life, and adjustments which might have to be made.

Ways to help

Help your child to come to terms with their condition; find out as much as you can about the condition so you are able to answer questions honestly and simply in ways your child will understand.

Just remember there is no single “right” response to the news that your child has an inherited retinal dystrophy but it is essential to be realistic, hopeful and positive. Try not to panic or become over-protective. Do not let children use their condition as an excuse for not fulfilling their full potential. Focus on the things that your child can do, encourage their attempts at learning new skills and gaining independence.

Give them the opportunity to become involved in sports or activities in which they can develop confidence. Confidence in their own abilities can be gained with the help of low vision aids or technical equipment. Continue to give responsibilities around the home, even in small amounts, this will help to develop their self-esteem, it may just take a little longer for them to complete tasks.

Remember just because your child may not be able to see everything that others see, it doesn’t mean that they can’t do most things that others can do, they may just need to learn other ways to do them.

As mentioned earlier there are many charities as well as statutory services that are able to support you and your child. It’s important to understand the options available to you and who can support at various points along your journey.

Retina UK – we are here to support you, as parents and your wider family. We are the organisation that specialises in inherited, progressive retinal conditions and this is where our expertise lies. We offer support by way of our helplines; our Talk and Support telephone befriending service and local groups either in person or online. These services are run by people living with our conditions so you know that you are speaking with people who have a genuine understanding of the day to day issues and concerns you may have.

We offer a trusted source of information about the wide range of inherited retinal dystrophies, to help you better understand your child’s condition. We do this via our website, our Unlock Genetics resource, webinars and information events and conferences. We also keep you fully up to date with the latest research into these conditions. There is a great deal of information out there on the internet but not all of it is accurate and up to date. We wanted to ensure that people had a go to place that they know they can trust.

We also understand the emotional toll that comes with having a child diagnosed with sight loss and recognise that it’s difficult to cope with the unknown. Acknowledging this may help you to deal better with uncertainty. Taking positive action to look after your own wellbeing can help you to feel more in control. We developed our Discover Wellbeing resource to support your emotional wellbeing now and in the future. Work through our Supporting Others course online by yourself, or alternatively, many people find it beneficial to have the support of a trained volunteer who will give you a regular call and help support you as you work through the modules.

Other organisations who specialise in support for children and young people:

There are a number of national charities that we work closely with who can offer specialist support to your child. From information on education; benefits; leisure activities, independence and transitioning into adulthood. Take a look at the links below:

The key thing is to remember that you are not alone!