Guide for the Newly Diagnosed.

For the newly diagnosed individual

If you have just been diagnosed with vision loss then it is likely that you are feeling a real mix of emotions including shock, anger, grief and sadness. It’s important to know that there are many ways that you can get help with adjusting to the news.

Some people may experience low vision from childhood or be diagnosed in their teenage years or later. Progression of vision loss can vary from person to person and it is important to be regularly evaluated by an eye specialist. For some, the loss of sight is slow and there may be only a small loss over many years. Others may have periods of rapid loss, often with years in between with no apparent decline. Some people with inherited retinal diseases may be able to continue participating in activities in much the same way for many years. Others may need support to adjust more quickly.

It is often helpful for people to be frank with others regarding low vision. Denial and covering up can reduce the chance of getting the help you need.  Once aware, people are generally very helpful and positive. It is particularly important to let teachers and other key people know who can make constructive adjustments to educational, workplace and social environments.

One of the hardest steps towards living positively with a vision impairment is acceptance. Acceptance is not easy and it is normal to go through periods of despair and of feeling resentful, bewildered or even angry. 
However, there are many ways that you can get support, and learn to live with vision loss.

A common challenge for vision impaired people is being able to move around independently. A mobility instructor is a great way to learn mobility and orientation skills.

Personal Identification
It can sometimes be challenging to prove your age or identity without a driver’s licence. Obtaining a Proof of Age card can be useful.

Family support
Families are often concerned about the impact for you of your inherited retinal disease and it is common for them to worry and want to be over protective. It is important to talk with your family about how they can help you to adapt and cope and what supports or help you might need to do the activities you are interested in.

Peer Support
Talking with people who ‘get it’ is immensely helpful. There are several forums, networks and opportunities for people to get connected and access support services.


For parents of the newly diagnosed

If you’ve just learned that your child is vision impaired, this is probably a difficult time for you and your family. You may be unsure how to tell family members and friends about your child’s vision impairment and where to start. You may be wondering how your child’s vision impairment is going to impact your family and your child’s future. Diagnosis of a son or daughter is naturally an overwhelming experience. Feelings can include shock, anger and frustration but there are many options for getting support and assistance.

Many parents will want to learn as much as they can about their child’s diagnosis and what the future will look like for their child. Developing an understanding of the diagnosis, of the different eye care professionals your child may be seen by, questions you can ask, and what you can expect at an appointment will empower you and your child to more clearly understand his vision impairment.

What to tell your child
Telling a child that he or she has a degenerative eye condition will never be easy. But it is important to be positive and honest. A young child may not understand. It is often best not to over load a young child with too much information.

Some things can be more upsetting than others for your child so it is helpful to prepared for these times. For example visits to the doctor, difficulty with an activity, getting lost and a general fear at losing their sight.

Helping to adjust
Help your child to come to terms with the diagnosis, and try not to panic or become over-protective. There is no single “right” response but it is essential to be realistic, hopeful and positive.

  • Ideally, try not to let children use vision loss as an excuse for not fulfilling their full potential.

  • Support them to become involved in sports or activities in which they can develop their confidence and include them in doing things around the home.

  • Gaining skills in the use of low vision aids, technical equipment, mobility and orientation can also assist with confidence and independence.

  • It can be helpful to speak with the school or education department to discuss the various options available to support your child both in the classroom and as part of any extra-curricular activities and excursions.

  • Contact with other vision impaired young people may be beneficial in addressing some of the feelings relating to loss of vision, and in developing an acceptance of their diagnosis. Also, parents may find it useful to connect with other parents.

Adapting the home
Many families of vision impaired children are concerned about the ability of their child to get around their home safely. There are many relatively simple things that can be done to help your child move safely through your home using their vision, if present, and other senses.

For example, you can make changes to lighting, glare, colours, contrast, textures and labels. You can also give thought to the way things are organised to reduce clutter and improve access to frequently used items. Many helpful tips can be found from the website of the American Printing House for the Blind:

Support for the family
It is also important to discuss with other family members what is happening. They may also have fears or concerns and may need their own support. You may wish to consider speaking with a Genetic Counselling Service or get in contact with the various vision support services near you.

For family and friends

The most helpful way people can assist those dealing with vision loss, is to be genuinely attentive, patient, empathetic and non-patronising. Open communication and a positive attitude will help everyone involved to manage the transition to incorporate change. Coming to terms with vision loss takes time and there is support available.

Practical support

  • Ask what support they may need.

  • Observe what they can do without help.

  • Listen to any suggestions such as how to arrange the house, keeping the floor clear of objects, not moving the furniture, shutting doors, clearing clutter, pushing in chairs and adjusting lighting.

  • When out, try to give warning of unexpected hazards such as steps, sloping pathways, uneven surfaces and doorways.

  • Learn the correct technique for being a ‘sighted guide’.

  • Be mindful of whether the disease is degenerative or progressive as adjustments may need to change over time.

  • Offer to help with figuring out transport options and solving other mobility challenges.

  • Encourage them to try out the various tools, devices and technology

  • Support their involvement in activities they are interested in.

Emotional support

  • Try not to be overprotective.

  • Listen to what they are telling you will be helpful.

  • Ensure you involve the person in decision making about anything that will affect them.

  • Encourage getting access to professional help and support if needed.