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A rose-tinted outlook

Rose Roberts was diagnosed with Stargardt macular dystrophy when she was seven years old. Now at the age of 12, she shares her vision experiences with OT 

26 Sep 2016 by Emily McCormick

It wasn’t until I mentioned something to my mum about not being able to see the board correctly at school and that the lights were sometimes too bright that she thought I should visit the local opticians for a sight test to see if I needed glasses.

It wasn’t until I mentioned something to my mum about not being able to see the board correctly at school and that the lights were sometimes too bright that she thought I should visit the local opticians for a sight test to see if I needed glasses.

It was during this visit that the optometrist picked up that something was wrong with my eyes. However, they weren’t quite sure what.

Getting a diagnosis

I spent the next six weeks going backwards and forwards to Moorfields Eye Hospital in London having tests done. Eventually, when they told me that I had Stargardt, I had no idea what the condition was, or what it would mean for my eyesight.

"I try not to let my sight loss hold me back. I love dancing and I take part in competitions – I would love to dance on stage one day"

Stargardt is a childhood inherited eye condition that affects the macula. It means that I have no central vision and I rely completely on my peripheral vision – so I can make out shapes, but I can’t see much detail. Looking back before my diagnosis, I always thought that something was wrong, but I also thought that everyone else was seeing it too.

After I was diagnosed in 2011, it was tough for my parents to come to terms with everything because they knew what was ahead for me – I just carried on as normal because that is what I had always known. Shortly afterwards my mum got in touch with Fight for Sight to find out more about the research that the charity is funding into Stargardt.

Not long after my diagnosis I went to the zoo and was looking at the animals – it highlighted that my vision had already deteriorated further as I thought the lions were logs. Following this visit I went to a low vision appointment where they gave me binoculars. 

"In terms of my future, I'm hoping that researchers will be able to find a cure for my condition"

Initially I thought my eyes could be fixed by wearing glasses. My friend wore glasses and I thought that if I wore them all the time just like her then my vision would be improved, yet that was not going to be the case.

I love going to the theatre, but as I can’t see who the people are on the stage or see shapes in detail, I have to use my binoculars. When I’m watching TV I have to sit particularly close, and when I go to the cinema I wear long-distance glasses. I can’t read road signs or train and bus timetables when I’m out and about either.

At school I struggle to read what’s on the whiteboard and I have trouble reading small print, so the work has to be blown up for me.

People often ask me: “Is your sight blurry?” but it’s difficult to fully describe how and what I see. If there was a sign in front of me, perhaps a few metres away, you could say that all of the letters merge together, which people think must be blurry, but it’s not necessarily.

The future

I try not to let my sight loss hold me back. I love dancing and I take part in competitions – I would love to dance on stage one day.

In terms of my future, I’m hoping that researchers will be able to find a cure for my condition. I’ve got lots of friends and family who support me and we’ve hosted a couple of fundraising events for Fight for Sight to help raise money. In four years we have raised funds of around £45,000 to support Stargardt research.

Fight for Sight is the UK’s main eye research charity. For more details call 0207 264 3900 or visit the Fight for Sight website.


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