We support everyone affected by inherited retinal disease

We are an organisation managed by volunteers. Most of our volunteers are directly affected by an inherited retinal disease. We are single-minded in our determination to ensure that everything within our power is done to benefit all Australians with an inherited retinal disease.

We have as our priorities:

  • to raise community awareness of Retina Australia and inherited retinal diseases,
  • to facilitate support to individuals, families and friends affected by inherited retinal disease,
  • to be a credible and preferred source of information related to inherited retinal diseases, and
  • to raise and distribute funds for research into prevention, diagnosis, treatment and cure of inherited retinal diseases.

We are here for everyone affected by sight loss due to an inherited retinal disease. Whether you’re losing your sight or you’re blind or partially sighted, our practical and emotional support can help you face the future with confidence.

Coping with sight loss

Reactions to vision loss have been likened to the stages of grieving that is experienced after the loss of a loved one—taking the person from denial to anger and depression, and finally, to acceptance.

Navigating the various stages successfully begins with understanding how they affect you and those around you. With understanding comes the ability to address conflicts, ease your fears, and move forward.
Successful adjustment to sight loss can be helped by adopting some of the common coping strategies:

  • Take time to assess how you are affected by this information and what it means for you.
  • Ask sensible questions of yourself and others. Be open and honest with those around you.
  • Devise personal coping systems. You may not necessarily like the change but you can begin to accept that it has happened and be willing to work it into your life.

Some key things to remember:

  • You are not alone. Vision loss affects many people from all over the world. Don’t be afraid to reach out to others experiencing vision loss, as well as to professionals, for information, advice, and encouragement. There is support available.
  • You can continue to lead a full, rewarding life. If you’re willing to make adjustments, there is no reason you cannot continue to enjoy your favourite activities, participate in family activities, do volunteer work, or travel. Indeed, the challenges of vision loss are consistently overcome each day by individuals who have simply chosen to participate fully in society.
  • You can continue to work. With technical assistance and relevant adjustments, most people who develop vision loss can remain in the work force.
  • You can remain independent. Whether you are experiencing a modest vision decline or are facing total vision loss, affordable and accessible solutions and tools exist to help you to cook your meals safely, navigate your home and perform other essential tasks on your own. New advances in technology designed for people with vision loss are regularly made available, and mainstream products, such as computers, mobile devices and home appliances, can often be adapted for your use.
  • Don’t give up Although a change in vision can involve difficult emotional reactions and adjustments, people who have experienced a loss of vision can continue to go about their lives and activities and remain independent in their own homes.

We acknowledge the work of the American Foundation for the Blind in preparing this guidance.

Self help and support groups

Self help and support groups can assist you to deal with life’s challenges. You can join a group online or one which meets regularly. Groups provide a great way to encourage and support each other, access information and education, and share experiences with people who can really understand.

In person
Get in touch with Retina Australia for further information on a meetup group or events in your area. If one doesn’t exist, then perhaps you can think about starting one.  Consider coming to one of Retina Australia’s congresses to meet other people with inherited retinal diseases and meet and hear Australian scientists who are researching inherited retinal diseases.

Facebook pages and groups
Social media provides the opportunity to connect with others with vision loss both locally and from all over the world. Groups may be general and include a range of relevant information or focus on a particular topic such as technology.

Popular Facebook pages include:

  • Retina Australia
  • Retina International Youth
  • Retina Australia – Youths
  • Blind Citizens Australia
  • Retinitis Pigmentosa (closed group)
  • Assistive Technology Community for the Blind and Visually Impaired
  • Guide Dog Handlers Australia

Emotional support

It is normal to experience feelings of sadness, anger, confusion and distress following diagnosis of vision loss whether it is yours or that of someone you care about.
It is often helpful to talk to these feelings over with someone else and there are many options available that can assist you.
At various times throughout your life these feelings may increase or be more difficult to manage. For example, things can seem particularly challenging in the early stages of learning to manage the disease, following periods of vision loss and deterioration, or simply in response to everyday life stressors such as studying, relationships, or employment.

Need help now?
Helplines such as Lifeline, beyondblue and headspace (for 12-25 year olds, family and friends), Kids Helpline and youthbeyondblue, can provide you with immediate access to support and advice.

Counselling gives you the opportunity to discuss issues that are causing you concern in a safe and supportive environment. 
Many people find that talking with a trained counsellor helps them to work out better ways to deal with things in either their life or relationships. Anyone concerned about themselves or someone else can go to counselling.

You can find a counsellor yourself or seek a referral from a General Practitioner. Many workplaces also offer Employee Assistance Programs which provide confidential counselling and you don’t have to talk about work.

Live Chat
Live chat services can provide you with access to counselling or advice straight from your computer or smartphone in real time.  Some examples include beyondblue online chatLifeline Crisis Support Chat,  and eheadspace

Advocacy services and support

Advocacy services work to improve the outcome for individuals and more broadly across the whole community. Some may act on behalf of people with a disability, their family and carers. There are also peer led advocacy services which provide support to each other.

Some helpful organisations include:

  • Blind Citizens Australia
  • Vision Australia
  • Guide Dogs Australia

For further information on advocacy services in your area contact Retina Australia.