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Donate monthly codeI remember eventually thinking enough is enough, I’ve got to use my cane, and so I started to.
Shane lives with late onset macular dystrophy, an inherited eye disorder he’s had since birth, but wasn’t diagnosed with until he was in his late 40s after he noticed problems with his central vision. As there is currently no treatment for this macular disease, Shane is now legally blind.
The number of Australians living with a macular disease is on the rise. By 2030 we anticipate more than 2 million people will be impacted by the disease. But there is a silver lining in spite of this – more investment into vital macular disease research can help flatten the curve.
The research we fund is only made possible through the support of our generous supporters. With your donation, you will be contributing to more transformative research that will help find new ways to save the sight of people, like Shane.
No longer being able to see my family and friends’ faces was one of my biggest fears when I found out I was going to lose my sight, explains Shane.
I was also afraid of not being able to move around freely by myself or complete everyday tasks.
Facing the realisation that I would no longer be able to drive or read and write documents was so daunting. Early on it was confronting for me to tell my family and friends about the adjustments I would need to make, along with my employer and colleagues as well.
Shane loved his career as an audiovisual professional, but his deteriorating vision eventually reached a point where even the basics of his job had become too mentally and physically exhausting. It was then that he made the difficult decision to leave his career, far sooner than he’d ever imagined, or ever wanted.
Shane would be the first to tell you that adjusting to his new reality wasn’t easy. He would refuse to use his cane because he wanted to hide that he was vision impaired. When he was no longer able to drive, catching public transport became essential. Navigating a train platform or boarding a bus was difficult with his cane left at home.
I remember eventually thinking enough is enough, I’ve got to use my cane, and so I started to, Shane reflects. What I found was that the cane told people I had low vision, so they were more inclined to help me. I would ask someone to read a sign for me and they’d be like, “sure, no worries, mate.”
I always think of this as a great example of how embracing your condition rather than hiding from it can really payoff. Once I accepted it and began using my cane my whole world changed for the better.
Before long, Shane was treating life with vision loss as a new beginning, rather than a life sentence.
I managed to change my thinking from what I had lost to what I could gain. That shift in perspective really helped me. I knew there was nothing I could do about my diagnosis, so I started focusing on how I could continue adding value and living a full life.
And that is exactly what Shane has done.
Earlier in his career, the Melbourne local was a professional cook. Today, he has reignited his creative passion in the kitchen, which has led to him sharing his eye-healthy recipes with the macular disease community via Macular Disease Foundation.
These days I enjoy relying on my other senses when I cook – taste, touch, smell. And my approach is more about a pinch of this, a handful of that – the measuring cups tend to stay in the cupboard. I’m planning on writing a cookbook. I might not sell a copy, but it’s always been a lifelong goal to create one, so I’m going to give it a shot!
Outside of the kitchen, Shane has discovered a new passion – blind golf.
If I get good enough, I could play in the Victorian Open or the Australian Open as an All-Abilities player. And the same with bowls, I aim to represent Australia at the Commonwealth Games. Representing my country in a sport is something I never would have imagined possible before my diagnosis.
There’s a whole new world opening up to me now. Just because I have an impediment, that’s not the end. There are always ways around the challenges, which often lead to opportunities.
There are currently no treatments for macular dystrophy, but it is our hope that research will change that in the future and improve the lives of people living with macular disease, like Shane.
Funding received from a generous Gift in Will to Macular Disease Foundation is allowing Dr Alexis “Ceecee” Britten-Jones to research a way to ensure people with rare inherited macular dystrophies receive the right treatment in the future.
Rare inherited macular dystrophies can be misdiagnosed as the far more common age-related macular degeneration (AMD), because the conditions can appear very similar on an eye scan. In the past, this hasn’t been much of a problem, because there was no treatment for either AMD or these inherited conditions. But now that researchers are developing new and varying treatments for both conditions, it’s essential that patients are diagnosed quickly and accurately.
That’s why Macular Disease Foundation has awarded Dr Alexis “Ceecee” Britten-Jones a Grant Family Fund research grant — to improve the diagnosis of different types of macular diseases to help patients access these emerging therapies.
By getting people the correct diagnosis, we can get them into the correct or the best treatments and clinical trials for their condition, and also prevent people from receiving the wrong treatments.
It’s important that we differentiate between different macular diseases because they have very different genetic causes and mechanisms, which means they need different treatments.
Although inherited retinal diseases — such as Stargardt disease and Best disease — and AMD may look very similar to a clinician, they have very different causes and risk factors.
AMD is caused by a combination of genes as well as environmental factors, or your lifestyle.
Inherited macular dystrophies, on the other hand, are caused by what Dr Britten-Jones describes as a “spelling mistake in the DNA that can be attributed to a single gene”.
The two conditions can appear similar, particularly for later onset macular diseases where inherited macular dystrophies can be mistaken for AMD. At the moment, it can be difficult for every clinician to know exactly what specific features to look for to differentiate between the two conditions, Dr Britten-Jones says.
Accurate diagnosis isn’t just important for ensuring patients receive the correct therapy — it also allows us to understand just how prevalent these conditions are. Knowing how many people live with inherited macular diseases helps bring emerging treatments to Australia, by showing how many people would benefit from them.
Really importantly, we wanted to make sure that these patients didn’t fall through the cracks, and aren’t given the wrong treatment either.
Dr Britten-Jones
Shane is living well with his diagnosis but for others it’s not so easy. Research gives hope for those who are losing their vision to macular disease. Together we can fight for the sight of all Australians.
Please donate today so we can continue funding breakthrough macular disease research.
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