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“My vision impairment has pushed me further”: Sarah’s story

Sarah CeravoloSarah Ceravolo, 32, has forged a successful career as a metalsmith, designer and architect. Living with vision impairment has brought challenges, but it hasnt held her back. Now, shes sharing her story to bring others hope.

I was diagnosed with Stargardt’s macular dystrophy in 2012. I had suspected that I might have it because my sister had been diagnosed with the same condition years earlier.

While sitting in the State Library sketching inside the domed reading room, I attempted to read a plaque fixed to the desk. The words bent towards the middle and that was when I first became aware I was developing Stargardt’s.

It began affecting my life when I had trouble recognising faces anymore from a distance. Getting around became progressively more difficult, however I have been enabled by technology.

I often say this is one of the best times to be vision impaired as the adaptive technology available can help a lot – my iPhone and Siri work as an incredible aid, to the point, ironically, I almost go weeks without thinking about or noticing my condition.

I started out as a metal-smith and finished my academic career with a Master of Architecture and still had pretty good vision. At the time I was studying, I learned to use digital design tools and was a very capable 3D modeller – I haven’t diverged from that path. 3D models rotate and enlarge so I am able look at them in detail.

Powered by creativity

In designing, my imaginative skills are very important – my results are not compromised by my impaired vision as the digital tools compensate for this. My creativity also applies itself to my adaptive nature in finding my way around my ailment. In a way, my eyes act really just as the middle man.

Some people don’t know I’m vision impaired – I have reached a point in my design career where I realise it is not a hindrance and often others don’t even notice it. I haven’t used it as a crutch. It has pushed me further.

I joined the board of Retina Australia (Victoria) soon after being diagnosed as I wanted to help others. I converted my personal experience into a tool as it would feel less like a burden if it became purposeful in facilitating me to help raise funds and create awareness.

One of my projects on behalf of R.A.V was the creation of a design studio module for the Product Design course aimed at vision impairment. I gave a lecture to students on the condition and where personal aids are lacking in this area. The students were super excited to participate and produced great designs as they felt it had such purpose.

Inspired by others

I know there are a lot of people who are worse off than me and I can rest assured that I will never be completely blind. I am inspired by so many people in the vision-impaired community and what they achieve.

I remember my sister Diana working hard to learn four languages. When I saw her tenacity, I knew I could do it too. People like Leighton Boyd (the Chair of Retina Australia) – who has worked all his life, now maintains the charity and looks after his grandchildren while living with RP. So many other amazing vision impaired people I admired have also inspired me.

Seeing things differently

My vision appears as a mild version of what you see when you stare directly into the sun and look away – you try and wait for your eyes to recover from the bright light. It’s not a black dot.

It’s difficult to see things if I look at them directly, and sometimes I won’t know who you are until you are close.

But the brain also substitutes what’s missing, and you take clues from what you are looking at. I don’t feel like I’m walking around blind. My peripheral vision is perfect and I fit what I need to see in my peripheral vision, but it can be tiring.

Some days I look at landscapes and remember how it felt when something was breathtaking on the horizon. There is nothing to substitute for that exact moment, but you find other ways of seeing beauty.

Supporting eye research

My whole immediate family had a blood test to look at our genetics and help with research. Even if in this lifetime there is no cure, the only way we can find one is through assisting the research.

There is a lack of awareness about the disease and you are told all the time that there is nothing that can be done for you. When you are first diagnosed and try to seek more information, you turn to Google and the first words you see are so disheartening and unhopeful.

I do think I will see a successful clinical trial that will help me in my lifetime, but this could potentially take decades. I believe there will be genetic therapies which will help people who are younger and prevent them from losing their vision. I think it is something for people to look forward to, and knowing this makes me happy.

This story appears in the spring 2019 issue of Visionary magazine. Download a pdf copy or subscribe to receive free in the mail.


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