Meet your team behind the new Eye Connect support service

Dilini is one of MDFA’s Health Promotion Officers supporting people with age-related macular degeneration through our new Eye Connect service. A qualified Vision Scientist and training Optometrist, let’s find out more about Dilini and her experiences helping people with macular disease, Australia’s leading cause of blindness. 

I imagine you’ve had many memorable moments with the people you have supported over the past six years at MDFA…

So many. One that has really stuck with me is a patient who had recently experienced a significant change in her vision. Her central vision was quite blurry and distorted. She explained that she was now finding it very difficult to recognise faces, and she was trying to use a person’s outline as an identifier. However, she recounted a few instances where she did not recognise someone due to a change in their outline – this might be because of a change in hairstyle or body shape – which led to these people assuming she was ignoring them.

Eventually, she started to actively avoid social events, and only left her house when necessary. She said to me: “How can I explain to someone that I can’t recognise them because they have gained or lost weight? That’s not a nice thing to say.”

Instead of using the words “body shape” or “weight change,” I suggested she use the word “silhouette.” She could say, “Sorry I didn’t recognise you! Your silhouette is slightly different to me today.”

This made a huge difference in this patient’s life. She called back a few months later to let me know that she’d started attending all her social events again, like her Probus Group, and that she no longer felt rude when explaining to people why she may not be able to recognise them.

I find it amazing how one simple word can change a person’s outlook or quality of life.

Why is helping people with macular disease important to you?

Macular disease is not just a diagnosis. It has implications on a person’s whole life. While I don’t have a macular disease myself, my vision is significantly affected by myopia, so I understand how changed vision can impact a person’s life. With this understanding, it is important to me that we don’t just see an eyeball, but the person as a whole. To try and improve their entire quality of life. And that’s what MDFA does.

Your role is extremely busy, particularly with the launch of Eye Connect. What drives you?

Having the opportunity to make a difference in someone’s life every day is a real motivator for me. And the feedback we receive from people is so uplifting – they are so appreciative of the support we provide.

A large part of my role is around educating patients about everything to do with macular disease. This might be information about the disease, government services, low vision aids and technology, or research.  I really enjoy the education aspect, where you can turn quite clinical or technical terms into common, everyday language. I get very happy when patients say, “Oh, this is the first time I’ve understood this” or “I finally understand now.”

I think there is still a lot of work to be done in the area of holistic patient care, but working as a health promotion officer within services such as Eye Connect really allows us to start filling in those gaps.

It’s early days for the Eye Connect service, but what are participants finding beneficial so far?

The patients really appreciate our regular comprehensive information packs. They like how every month, there is a different topic they can learn about, without it being overwhelming. I encourage people to get in contact with us if they need support living with macular disease.

Eye Connect is currently available to people living with any stage of age-related macular degeneration (AMD). In the near future the service will be expanded to support a number of other macular conditions. More information about Eye Connect and how you can join is available here.

Posted: 15 Aug 2024