A new support service – Eye Connect – has been launched to help those diagnosed with age-related macular degeneration (AMD). The condition is Australia’s leading cause of blindness.
The thought of losing something as basic as sight is a confronting one. It’s one I faced some years ago when diagnosed with early stage glaucoma. Glaucoma causes irreversible loss of vision through optic nerve damage. I’d heard of glaucoma, but my knowledge was limited to knowing that it can lead to blindness.
My diagnosis therefore induced a brief period of panic. A support service such as Eye Connect would have been very helpful in that period. The good news for me is that glaucoma generally affects peripheral vision and treatments are available to help prevent further loss of vision.
For those diagnosed with AMD, the scenario is somewhat different. The affected part of your eye is the macula. The macula is an area at the centre of the retina, at the back of your eye. It’s only about 5.5mm in diameter, but it is responsible for detailed central vision. That means you use it for the important things, such as reading, driving and recognising faces. It’s also responsible for most of your colour vision.
Confronting
To be diagnosed with AMD, therefore, would be very confronting indeed for most. Yet research shows that historically the medical profession hasn’t been very good at providing support at the time of diagnosis.
In fact, studies reveal only 56 per cent of patients with macular disease recall receiving a clear diagnosis, including the name of their condition. Perhaps more disturbingly, 58 per cent of patients are unable to recall receiving any lifestyle modification advice from their eyecare professional.
This is where Eye Connect can help. And it won’t be a ‘niche’ service. An estimated 1.9 million Australians are living with macular disease.
What is Eye Connect?
Recognising the shortfall in support, Macular Disease Foundation Australia (MDFA) has launched Eye Connect to help those diagnosed with AMD. It is described by MDFA as “Australia’s first comprehensive and free support service for people living with the country’s leading cause of severe vision loss and blindness”.
But what does that entail? Eye Connect aims to provide a range of tailored support to those with AMD. The service provides evidence-based information and guidance that people can rely on and access in between appointments with their eyecare professional. Eye Connect’s support service is built on three basic pillars:
- Health information: People are provided with evidence-based information about macular disease and non-clinical support services to help them confidently manage their condition.
- Practical advice: Tips and guidance on things like nutrition for healthy eyes, immediate care after their appointments, daily living with reduced or low vision and transport advice.
- Emotional support: For some, a diagnosis of macular disease – or living with an eye condition – can be a difficult time. The Eye Connect team can help patients manage some of the worries and concerns they may have about their diagnosis and treatment. Eye Connect can also connect people to peer support. This provides access to trained volunteers and other people also living with macular disease.
The last of those will be important for many. As important as receiving practical advice from a health professional might be, being able to compare notes with someone on a similar journey can provide a huge psychological and emotional benefit for many.
Where do I sign up?
Access to Eye Connect is available via this link to the MDFA portal.
CEO of MDFA, Dr Kathy Chapman, says Eye Connect will help people access support after seeing their eyecare professional. “We know that many people struggle to remember their eyecare professional’s advice when they are in the midst of their day-to-day lives,” Dr Chapman says. “[Eye Connect] offers information people can trust and connect with when they need to.”
In further good news, MDFA plans to expand Eye Connect to include support for those with diabetes-related eye diseases. If this support model proves successful, perhaps other areas of the health sector could consider adopting a similar service.
Have you been diagnosed with AMD? Is a service such as Eye Connect one you’d consider using? Let us know via the comments section below.
Also read: Macular disease linked to alcohol intake
