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I’d seen my retirement as an opportunity to read all the things I never had time to when I was still working. And that suddenly vanished. That creates emotional issues which I never expected.

Roger, aged 79

Losing your vision can feel like you are losing everything. It’s a potential reality faced by over 1.5 million Australians living with age-related macular degeneration (AMD), like Roger. Roger is a former lecturer who has been living with AMD for 15 years. Once an avid reader reliant on his vision, Roger’s gradual loss of sight means he has faced significant challenges, including feelings of isolation and depression, as he navigates his condition. 

It does give you an emotional hit. All my life I’ve depended on reading and using a computer. The suggestion that I was eventually going to lose central vision and not be able to read really shook me.

Meet Roger

But here is the ray of hope: the introduction of Australia’s first comprehensive and free support service for people living with macular disease. 

MDFA’s new community support service aims to give people living with AMD personalised information and guidance, so they can receive the very best care in between visits to their eye health professional. With tailored health information, practical advice, and emotional support, our new service can help people better adhere to the recommendations from their eye health professional, and live well with AMD. Like all of our services, this individualised program is provided free of charge, making your support even more vital. The need for support services is crucial because of the growing prevalence of AMD. As our population ages, the number of older and more vulnerable Australians facing the uncertainty and challenge of living with macular disease is expected to rise significantly. It is anticipated that AMD will affect 1.7 million Australians by 2030. 

Roger’s story is a common one, a reminder of the profound impact AMD has on everyday life. Although Roger now uses a large TV screen for viewing and reading, and a magnifier to read printed text, it is getting harder as his condition progresses. He explains the physical and emotional toll this takes. 

When I’m out walking, I have to be really careful approaching a curb. I haven’t fallen yet, but I’ve had some close calls. I’m also beginning to notice that when I’m approaching people in the street – people I know – I don’t recognise them until they’re really close or until they speak. Yes. Bang, it affects you. I’ve always been fiercely independent and never expected I’d need professional help in dealing with mental health issues. But I did. If it’s an aspect of the transition that I’m finding difficult, then it’s something other people will encounter at some point.

This is where our support services team steps in – and where your support becomes pivotal. At MDFA, we recognise that a person’s needs and experiences when living with AMD change over time. Developed from extensive research and feedback from our community, our new customised support program addresses the gap between clinical care and the everyday reality of living with macular disease. People like Roger can receive tailored guidance, information and resources at various stages of their journey, as well as regular check-in phone calls to help answer any questions. 

We want people to have the confidence to overcome any challenges they might be facing, and feel empowered to manage their condition with confidence and self-assurance. 

The service also extends to families and loved ones, who can be equally affected. Roger’s wife Edda explains: 

It has been emotionally difficult. I had to get rid of a lot of Roger’s library books because he just can’t read them anymore. I also miss the fact that he can’t do projects around the house that we used to do together. And I worry about him going out to meetings on his own.

Roger’s story highlights the critical need that MDFA provides, extending support beyond clinical care, helping people like him manage their condition and face the world again with independence and confidence. 

At one stage last year, I could barely bring myself to leave the house. But now I’m back walking regularly. In fact, I do letter boxing for the city council once or twice a month for about 4,000 residents in the local area. Living with what your own mind makes of this disease is part of the battle. I found it helpful to know where I was going and what I would have to learn to adjust to. I wish I’d had the advantage of this program earlier.

Too many people are facing fear and the threat of a reduced quality of life as they navigate their diagnosis. That’s why we are proud and excited to share our new community service with you. As the first support service for all Australians with AMD, our promise is to ensure no one faces this journey alone. But we cannot do this without your help.  

Please donate this Tax time so we can continue to provide vital support services, free of charge, to every Australian living with macular disease. We thank you in advance for your wonderful support. 

Thank you for your donation

Thank you for your generous support. And remember, if you or a loved one ever need information, advice or just a friendly chat, please call our National Helpline on 1800 111 709.