Living with Aniridia

What colour are your eyes? Are they blue, green, or brown? It’s something most of us take for granted. But for me it’s not that simple.

My name is Glen, I’m 33, and I have a rare condition called Aniridia. This means I was born without irises, so I don’t technically have an eye colour. Aniridia affects just 1 in 47,000 people, and to mark the first ever Aniridia Day on 21st June 2017, I’d like to tell you a bit about how it affects me.

The iris has an important job. It adjusts the size of the pupil to control how much light enters your eye; they will shrink in bright light to allow less light, and expand in the dark to allow in more light and help you see better.

Without an iris, my eyes are very sensitive to glare and brightness.  On cloudy days I wear sunglasses because there can be glare coming off from things like clouds, walls, and windows. And it gets worse if the sun reflects of rainwater or if I’m feeling tired or unwell.

Similarly, computer programs often have white backgrounds, which also cause glare. So I invert the colours to give me white text on a black background, which I find a lot more comfortable. I then flip it back to normal when looking at photos or videos, or else they look weird!

Additionally, I also have to be careful when I’m going into a dark room. I may have to hold on to another person or wait a few minutes until my eyes adjust to the level of light available in the room.

Living with aniridia hasn’t stopped me from living my life though. I’ve graduated from university and I’ve been working in my job for over 12 years. I also love travelling and socialising. Furthermore, since I moved to London last Christmas, I’m having a great time exploring the city and making new friends – including the very welcoming members of East London Vision, and I’m involved with Aniridia Network UK as well. So I’m happy and comfortable, and the future looks bright as long as I wear my shades!

GlenTurnerNHM
Photo of Glen and a tour guide at the Natural History Museum holding a piece of zebra fur, during a trip to the museum in April 2017.

You can find lots more about my visual impairment and the things I enjoy at the following links:

Blog – www.welleyenever.com

YouTube – https://www.youtube.com/channel/UCv7AcWqn3r_HxQRAtxVe5Fg

Twitter – https://twitter.com/well_eye_never

Instagram – https://www.instagram.com/welleyenever/

Thanks for reading!

Written by Glen Turner

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eastlondonvision

East London Vision (ELVis) is the subgroup for the 7 geographical areas that naturally cover all of east London north of the Thames: • Barking and Dagenham • City and Hackney • Havering • Newham • Redbridge • Tower Hamlets • Waltham Forest. ELVis is designed to provide an effective and efficient way of ensuring that vision impaired people living in East London get the support and services they need. It is an umbrella organisation with voluntary sector, user led representation in each of the east London boroughs. Our vision is that everyone living in East London experiencing, or at risk of, any form of sight loss, receives a high quality service relevant to their need and at a time appropriate for themselves. Our aim is to enhance & link vision impaired services and organisations throughout East London, improving the quality of life for blind and partially sighted people and increasing individual independence.

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