Finding Her Tribe: Navigating Macular Disease with MDFA

For Jan Francis, the initial signs of macular disease were subtle. While painting with her long-handled brushes, she noticed she was unexpectedly hitting the canvas earlier than anticipated.

“I thought that it was odd and when it was becoming more regular I shared my concerns with my husband George. An appointment was made to visit our optometrist and find out why my depth of vision was compromised.

“I like to get into the garden and I did experience a poke in the eye from one of the leafy plants and I thought perhaps I had damaged my eye in that way.”

By the close of business that day however, after an urgent referral to an ophthalmologist, Jan had been diagnosed with nAMD in her right eye.

“It was an enormous shock to receive that diagnosis and be told that I was on the path to legal blindness if I didn’t act quickly.  I can still remember the day; I was just so frightened and confused with racing mixed emotions,” Jan recalled.

But in the waiting room, Jan found her lifeline; a brochure from Macular Disease Foundation Australia (MDFA), encouraging macular disease patients to ring if they needed help.

“I knew that I had to reach out to MDFA, even though I could not even say the words ‘wet macular degeneration’ because I felt that if I did, it would be real.

“So, I rang these beautiful people and they were just so welcoming and totally understanding. They understood exactly where I was on the macular journey and what I needed to be told. They gave me a glimmer of hope and the courage to go back later that week to have the first injection into my eye.”

“I could not even say the words ‘wet macular degeneration’ because I felt that if I did, it would be real”

The Reality of Treatment

Since her diagnosis, Jan has received around 40 eye injections. The procedure she once viewed with so much trepidation, she now welcomes as a means to keep her vision.

For 79-year-old Jan, these injections represent more than a medical intervention: they are a testament to the importance of early detection and prompt action.

She credits both her ophthalmologist and MDFA for making the experience more manageable. “It’s not pleasant,” she admits, “but knowing that it’s preserving my sight makes it worthwhile.”

George, who is an internationally renowned sculptor, and Jan live and work in their owner-built mudbrick home and gallery called Moongate Studios, which she describes as “a birdsong from Bells Beach, Victoria”. That means she needs to travel to the regional city of Geelong for her treatment every few months.

She said she’s grateful for the support she receives from George, who drives her to appointments. However, she acknowledges that not everyone is as fortunate. For those in regional or remote areas, accessing treatment can be a significant challenge, amplifying the need for advocacy and support.

The Role of MDFA

MDFA’s role extends far beyond providing emotional support. The Foundation equips patients with up-to-date information on macular disease, treatment options, and news about ongoing research.

MDFA’s newsletters, educational events, and initiatives like Eye Connect – a free programme offering regular check-ins for patients – have become integral to Jan’s journey.

“It’s like finding your tribe,” Jan said. “They understand where you are on the macular journey and what you’re going through.”

The MDFA’s advocacy efforts, particularly in lobbying for better government support and healthcare funding, resonated deeply with Jan, who now participates by sharing her lived experience.

“It’s like finding your tribe… they understand where you are on the macular journey”

Advocacy Through Art

As an artist, Jan initially feared that disclosing her diagnosis might affect her career. “I was unsure how my clients might respond to my changed vision status,” she admitted. However, over time her perspective has shifted.

Embracing her role as an advocate, Jan now speaks openly about her experiences, sharing her story with optometry students at Deakin University and even addressing members of federal Parliament to highlight the importance of accessible eye care.

The Value of Referral

Today, Jan continues to manage her condition with optimism and gratitude. While she has transitioned to a new treatment due to changes in her symptoms, her vision remains stable. “I still have 20/20 vision with my glasses,” she told mivision, a fact that she finds both surprising and reassuring.

MDFA Chief Executive Officer Dr Kathy Chapman said Jan’s experience highlights the value of referring patients to MDFA.

“As an eye care professional, you provide your patients with the best clinical care and information about their AMD during their appointment. But, beyond that, MDFA can provide the emotional and educational support that can significantly enhance patients’ quality of life.

“Eye Connect is an evidence-based programme that provides people living with age-related macular disease with tailored information and support, whether they are at risk, in the early stages of AMD, or living with advanced AMD and vision loss,” Dr Chapman said.

“As Jan’s story illustrates, the journey with macular disease is not one that anyone should have to face alone.”

To refer patients to the Eye Connect programme, visit: mdfoundation.com.au/refer-your-amd-patients-to-mdfa.