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I’m accustomed to reading, I’m accustomed to doing things at the church, and I thought that’s all going to stop. I was shocked.

William

Meet William

Imagine being told you will lose your vision if you don’t receive eye injection treatment every month for the rest of your life. This is the reality for more than 108,000 Australians living with neovascular age-related macular degeneration (AMD) who must receive treatment to save their sight.

William is one of them. Ordained as an Anglican priest in 1957 in his regional town, William’s life was rocked two years ago when he was diagnosed with AMD in his right eye during a routine check.

I hadn’t noticed any issue with my vision until this one day I had a problem seeing the alphabet chart at the optometrist. It hit me straight away that something wasn’t right. My optometrist sent me immediately to an eye specialist. There was no warning leading up to that – everything happened so quickly.

William’s experience is not unique. For many, a routine eye check can descend into a moment where life will never be the same. A diagnosis of AMD is lifelong – there is no cure. There can be many challenges for people who live with the condition, including a loss of independence, social isolation and the ability to do things they once loved. The impact is even greater for those who live in rural and regional areas, like William.

The need for support services outside of medical clinics is critical because of the growing prevalence of AMD. It’s estimated that 1.7 million Australians will live with AMD by 2030. More vulnerable Australians facing the uncertainty and stress of living with AMD means we need to do more to support them.

This is why Macular Disease Foundation Australia launched our free Eye Connect support service – the first support service for people with AMD in Australia. William and hundreds of people are now benefiting from the personalised support our Eye Connect team offers, which includes:

• Evidence-based health information so people can confidently manage their condition
• Practical advice, tips and guidance on nutrition for healthy eyes, immediate care after appointments, daily living with reduced or low vision, and transport advice
• Emotional support through what can, for some, be a very difficult time.

The number of people participating in Eye Connect is growing rapidly. We need more funding to help more people who need the Eye Connect service, particularly members of our community who are older and more vulnerable.  

We recently conducted a survey with Eye Connect participants, which highlighted the benefits people are gaining from the service to help them live well with AMD. Notably, 98% of respondents indicated they would recommend the service to their family or friends, with 75% acknowledging a positive impact on their general wellbeing. For those enrolled in the service, 93% of participants have continued using Eye Connect, demonstrating the tangible benefits they receive in managing their diagnosis.

Like many people living with AMD in regional Australia, William is forced to travel great distances to receive regular eye injection treatment to save the sight in his right eye. His wife drives him to his eye specialist appointments, which is a four-hour round trip every 13 weeks, because his family is no longer happy for him to drive outside of the local town,

According to my wife and my sons, I’m allowed to drive around the town, but not outside of that. After I see the specialist for an eye injection it slows me down a bit – I feel exhausted and am in a bit of pain. But after that I’m on the go again.

William says he’s had to pull back on his community duties, including addressing the congregation and public speaking as reading print has become a challenge, particularly in dimly lit public buildings.

As part of the ministry, I visit people in local hospitals which can be challenging when I’m doing a blessing or prayers with someone who’s sick. I often have to throw the book away and do everything from memory because I can’t see the words in some sentences clearly in some wards.

This is where Eye Connect can help – and where your support is vital. At Macular Disease Foundation Australia, we recognise people have individual needs when it comes to living confidently with AMD.  People like William can now receive personalised support, including regular phone check-ins, information and resources to address specific concerns and challenges on their AMD journey.

William has been with Eye Connect for just over a year.

Once I got in touch with the Eye Connect team, they began sending me information regularly. And they’re working on some incredible research. I learn from that. If people have trouble with their sight due to AMD, Eye Connect is the way to go. I recommend people who are diagnosed with AMD to make the connection straight away, there’s a lot of help there.

We want to empower and support people to manage their diagnosis with confidence and optimism. Extending support beyond clinical care and helping people like William manage their condition is critical, particularly as the number of people diagnosed with AMD continues to grow.

With your wonderful support this tax time, we can do so much more to help improve the quality of life of the 1.5 million people living with AMD.

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.