“Are you next in line to go blind?” asks Ita Buttrose, Patron of Macular Disease Foundation Australia (MDFA).
She says more than 60 per cent of Australians are unaware of the strong familial risks associated with Australia’s leading cause of blindness, putting their direct family members at risk of vision loss.
“People with siblings or parents with age-related macular degeneration (AMD) are in a high- risk category and have a 50 per cent chance of getting the disease,” Ms Buttrose said. “The best defences against vision loss from AMD are awareness and early detection.”
To coincide with Macula Month, which runs throughout May, MDFA commissioned two YouGov Galaxy surveys targeting both the general population and Australians with AMD.
Results indicated that:
- Sixty three per cent of the general population don’t know there’s a familial risk associated with AMD.
- Among Australians diagnosed with AMD, only half (50.1 per cent) are aware of the hereditary connection and many dramatically underestimate the risk.
- Of the people who do understand the familial connection, almost one third (29 per cent) have not told all relevant family members they may be at risk themselves.
- Only one in three (33.2 per cent) of those with AMD recalled being informed about the potential familial risk by their eye health professional.
AMD is a painless, progressive eye disease that destroys central vision. It is the most common macular disease, accounting for 50 per cent of all cases of blindness and severe vision loss in Australia. One in seven Australians over the age of 50 – almost 1.3 million people – already have some evidence of AMD.
There is no cure for AMD but there is effective sight-saving treatment (anti-vascular endothelial growth factor injections) for one form of the disease (wet or neovascular AMD) if detected early.
In addition, a macular-friendly diet and lifestyle changes such as regular exercise and quitting smoking are proven to delay onset and progression of AMD.
“From my experience as MDFA Patron, I know that people living with macular disease are extraordinarily stoic,” Ms Buttrose said. “They know their sight loss places a burden on their loved ones. I suspect many people with AMD don’t talk about the risk because they don’t want the people they love to worry.
“But we must start talking about how this disease can run in families. My father had AMD. Two of his siblings were diagnosed with it. I’m at risk, which is why I’m proactive about my eye health.”
MDFA CEO Dee Hopkins says the statistics are alarming, for the community generally but also for eye health professionals.
“Familial risk is crucial information and we’ll be working closely with eye health professionals on ways to better communicate this to their patients,” she said. “Early detection is vital to help slow progression of the disease.”