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Woman, 21, reveals she feels lucky to have lost her vision to macular dystrophy

For years Candice Kennedy thought she was dyslexic – she couldn’t focus on words written down in front of her and struggled to recognise numbers on boxes at the shoe shop where she worked.  

But it wasn’t until she was driving with her mum during a short visit back to Adelaide when she realised something was seriously wrong.

‘Mum told me to look at the road – I was – but my head was turned towards the side window because that was the only way I could see in front of me,’ she told Daily Mail Australia.

Candice Kennedy, 21, has revealed how she found out she was actually legally blind and what the diagnosis meant for her future

The young woman, centre, had to move back in with her parents, also pictured, after her vision deteriorated to the point where she couldn't drive

The young woman, centre, had to move back in with her parents, also pictured, after her vision deteriorated to the point where she couldn’t drive

Pictured here with her partner David Parsons, who she met after her shattering diagnosis, as she re-built her life inside the blind community

Pictured here with her partner David Parsons, who she met after her shattering diagnosis, as she re-built her life inside the blind community

‘Mum made me pull over there and then,’ she said.

The 21-year-old had already given up on driving at night – after a near miss when she didn’t see another car at the traffic lights in front of her until the last second. 

‘I saw the brake lights go on and I remember I was so shocked because I had been watching the road and the traffic lights and hadn’t seen anything – it was like it came out of nowhere,’ she said.

She went to an eye doctor, who forwarded her to another specialist, and after months of appointments she was told she had macular dystrophy.

She was legally blind.

Mr Parsons was a 'pilot' at the blind tandem cycling centre where Ms Kennedy first visited

Mr Parsons was a ‘pilot’ at the blind tandem cycling centre where Ms Kennedy first visited

The young woman says she still likes to go on adventures and says yes to new things because she doesn't want to be limited by her lack of sight.

The young woman says she still likes to go on adventures and says yes to new things because she doesn’t want to be limited by her lack of sight.

Ms Kennedy found she was isolated and depressed then her mum messaged former The Voice contestant Rachel Leahcar, who changed their lives forever

Ms Kennedy found she was isolated and depressed then her mum messaged former The Voice contestant Rachel Leahcar, who changed their lives forever

‘I had no idea about anything to do with blindness, I thought people could see or they couldn’t. I didn’t know there was a spectrum,’ she said.

The condition means she has a giant blind spot in the centre of her vision.

‘It is the opposite of tunnel vision – I can see some things peripherally but have nothing on the middle,’ she said. 

‘I struggle to see people’s facial expressions and it makes it hard to read and write.’

In hindsight the condition had been growing worse year-by-year since Ms Kennedy was 11.

She started losing her vision to macular dystrophy when she was 11 years old

She started losing her vision to macular dystrophy when she was 11 years old

The young woman now competes in blind tennis - and loves the sporting community

The young woman now competes in blind tennis – and loves the sporting community

She also takes part in tandem cycling which sees vision impaired and blind people paired up with people who can see

She also takes part in tandem cycling which sees vision impaired and blind people paired up with people who can see

‘I diagnosed myself with dyslexia when I was a child because I couldn’t grasp a whole picture or word, it didn’t make sense, and the only thing I knew that could be was dyselxia.’

At this point there was only a tiny blind spot – the size of a pin prick.

‘My friends got glasses and that helped them read, so then I went to the optometrist and they gave me glasses too.

She says her life is better now, as she has once again grown the confidence to live independently and is now studying

She says her life is better now, as she has once again grown the confidence to live independently and is now studying

WHAT IS MACULAR DYSTROPHY AND WHAT ARE THE SYMPTOMS?

Macular dystrophy is a rare, genetic eye disorder which causes loss of vision. It leads to the damage of cells in the macular – which is responsible for central vision.

It also impacts colour perception.

Mild blurring and mild distorted vision are early signs. Straight lines such as sentences on a page becoming distorted, or blurry areas of a printed page are other symptoms.

Some people experience difficulty reading or seeing details in low light, but also sensitivity to glare. 

‘They enlarged everything but after a while I would be back getting something stronger.

‘They were just having some kind of placebo effect on me – working because I believed that this time they would,’ she said.

When Ms Kennedy found out she was legally blind her world fell apart.

‘I moved back in with my mum and I became really depressed. I had been living in Darwin, driving, I had my own life and now I was losing all of my independence,’ she said.

‘My mum watched me spiral down into depression – and on my bad days I knew she felt even worse because she couldn’t do anything to help me.’ 

The young woman often struggled with reading - she thought it was dyslexia - now she knows it was the beginning of her macular degeneration

The young woman often struggled with reading – she thought it was dyslexia – now she knows it was the beginning of her macular degeneration

Ms Kennedy says she was overwhelmed at first and could only find help for fee support - but has found the blind community to be really welcoming and encouraging

Ms Kennedy says she was overwhelmed at first and could only find help for fee support – but has found the blind community to be really welcoming and encouraging

But then her mum messaged former The Voice contestant Rachel Leahcar, who changed their lives forever.

The two young women became friends – and Ms Leahcar – who knew how much Ms Kennedy craved independence asked how she felt about tandem cycling.

‘There are a lot of sports for the blind I had never considered.

‘When I first got diagnosed I had trawled google for support groups – but couldn’t afford any of the options I found.

‘But she helped me connect with the blind community – and it is a very supportive community.’

The young woman, who was earmarked by colleges in the US at 14 for her softball skills has thrived being able to be active again.

The young woman still participates in a lot of sports including rock climbing, blind tennis and tandem cycling

The young woman still participates in a lot of sports including rock climbing, blind tennis and tandem cycling

'People with disabilities don't need to be inspiration porn - there are people out there with bigger struggles but it is seen as different because of the labels we put on it,' she said

‘People with disabilities don’t need to be inspiration porn – there are people out there with bigger struggles but it is seen as different because of the labels we put on it,’ she said

‘In a way I feel like I have been lucky to lose my vision, because it has given me so many opportunities,’ she said.

‘It was scary being 14 and having everything for my future decided already,’ she said.

The young woman now lives out of home, after working out how to once again be independent following her shattering diagnosis.

She lives with her partner – who she met during tandem cycling, and she has a completely reformed understanding of what it means to have a disability.

‘I went from being normal to being under the umbrella of ‘disabled’ so quickly.’

‘People think we have it harder or we go through a lot – but everyone has bad days, I have seen it from both sides.’

'In a way I feel like I have been lucky to lose my vision, because it has given me so many opportunities,' she said

‘In a way I feel like I have been lucky to lose my vision, because it has given me so many opportunities,’ she said

'When I first got diagnosed I had trawled google for support groups - but couldn't afford any of the options I found,' she said

‘When I first got diagnosed I had trawled google for support groups – but couldn’t afford any of the options I found,’ she said

‘People with disabilities don’t need to be inspiration porn – there are people out there with bigger struggles but it is seen as different because of the labels we put on it,’ she said.

Ms Kennedy now plays blind tennis as well and is looking forward to the future, intent on trying new things, like rock climbing, and remaining independent.

She is currently doing a bridging course for university – studying has become easier for her now she understands why words don’t make sense on paper and has the tools to help her succeed. 

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