The Reality of Aniridia & Nystagmus – Guest Post by Glen

Glen’s guest post is the 47th post in the segment on my blog, called “The Reality Of…” which gives others the ability to share their story and raise awareness of the disabilities, illnesses, impairments and invisible illnesses that they have.

Meet Glen!

Hi! My name is Glen, I’m 36 years old, and I’ve been living in London for the past 3 years since relocating from Devon. I’ve continued to provide IT support for my Devon employer as a homeworker, while in my spare time I enjoy musicals, comedies, museums, eating out, walking, travelling, socialising and blogging.

Glen has his side to the camera, he is wearing dark sunglasses and has a pair of white earphones in his ears. A large church/cathedral is in the background. People who are walking past are very blurred.

My Story

I was born with the genetic condition, Aniridia, which means I don’t have irises (the coloured circles) in my eyes. In my case it’s congenital, because it was inherited from my mother. But for some the condition can be sporadic, meaning the particular gene (PAX6) gets corrupted purely by chance. It affects approximately 1 in 47,000 people. In even rarer cases it can be part of a much more complex condition called WAGR Syndrome, but I don’t have that.

I also have Nystagmus as a direct side-effect, which means my eyes have constant involuntary movements. It’s very common amongst people with Aniridia, but not everyone gets it. Nystagmus can come as part of the package with many other eye conditions, or can occur on its own, so it’s much more common, affecting 1 in 1,000 people.

Both conditions are currently incurable and vary in severity from person to person. I am also more susceptible to things like cataracts, glaucoma, etc. as time goes on.

Common Symptoms

The iris is a muscle that adjusts the size of the pupil, to control how much light enters your eye. The pupil gets smaller in bright light, so you’re not blinded by it, and expands in dark conditions, to let in as much light as possible to help you see better.

As I don’t have an iris due to Aniridia, therefore, my eyes are unable to make those adjustments. I think there is some remnant of the iris muscle there, as my eyes are able to adjust a tiny bit, but it’s a very limited and slow adjustment.

The involuntary movements caused by Nystagmus mean that my eyes are unable to focus clearly on anything that’s small or at a distance.

How They Affect Me

Because I cannot adjust properly to light, I am very sensitive to glare, especially when outdoors. It makes my eyes water and get very sore, and it can be extremely difficult to see where I’m going. And I get even more sensitive if my eyes are tired or if I have a cold.

Sunlight is therefore a particular problem – not just from viewing it directly, but also light-coloured walls, pavements and other surfaces that it bounces off. If it’s recently been raining as well, then the sunlight reflects off all the water too. And even if it’s not sunny, the daylight still has enough glare to be disruptive for me, unless it’s a very grey, cloudy day. White backgrounds on the screens of computers, smartphones, etc. also generate a lot of glare as well, making them a strain to read.

On the flipside, it’s also difficult to adjust to dim light and darkness. For example, if I go from a sunny outdoors into a dark pub, I can be almost blind for a few moments while my eyes slowly try to adjust as best they can. And I have to stick to well-lit areas when I’m out in the evenings.

Glen is preparing for his charity abseil. He is on the Orbit Tower, in the Olympic Park, in Stratford London.

As for Nystagmus, the common misconception is that my view of the world must be shaky because of my jerky eye movements. But actually, the world seems relatively still to me. Having had it all my life, my brain has adapted as best it can. I still notice it sometimes, for example if I try to focus on a fixed point, and it does become much more of a hindrance if I’m tired or stressed. But generally, if I just let my eyes do their own thing, I don’t particularly notice. The fact that there’s always a bit of drift in my vision just seems normal to me, as I’ve never known any different.

Its key impact is the limited ability to focus, as I can only read things clearly and understand the detail when they’re close-up or enlarged. At a distance, I can make out the general shape, size and colour of prominent objects, but I cannot see their detail, text, etc. It’s a bit like normal-sighted people seeing the world in 4K while my eyes are stuck using VHS tapes – it’s enough to get by on, but a lot of information is difficult to see, it gets increasingly shaky when I try to focus on something intently, and the more I use it the more it’ll gradually deteriorate over time.

Learning to Adapt

I went to a school for the visually impaired, and have had a lot of support from friends, family, doctors, social workers and disability charities over the years, all of which has been a huge help. And I’m also fortunate to have grown up at a time when there’s a lot of accessible technology available.

When I go out during the daytime, I wear green-tinted sunglasses, even if it’s cloudy, because the green colour reduces glare significantly. It doesn’t eliminate it entirely, and if my eyes are having a bad day, they’re of limited help. But normally they help a lot. On my phone and computer, I use the accessibility feature that inverts the colours, or the “dark mode” that’s now built into some websites and apps, so that I have a dark background with light coloured text on it. That greatly helps to reduce eye strain from screen usage.

I also use a magnifying glass, or more often the iPhone’s built-in Magnifier app (hidden away under Settings > Accessibility) to read anything small. To read things in apps and websites on my computer and phone, I use the accessibility features to increase the font size and zoom in on the screen, and sometimes I use speech if it’s easier to listen to longer passages of text.

And when I go out, I have a monocular (a small telescope) that I use a lot to read signs, shop names, train destinations, bus numbers, and so on. The Seeing AI app is also really useful for scanning text and speaking it back. Plus, I really enjoy going to audio described theatre shows and museum tours (which I regularly blog about), and use audio description on TV.

Have I Changed As A Person?

As I was born with my conditions, I don’t feel like I’ve ever lost anything, because I’ve never known any different. My eyesight has always seemed normal to me. If my sight gets worse in the future then that will be a hard bridge to cross, I’m sure, but I’ll do what I can to reduce or prevent any deterioration in the future (e.g. having cataracts removed).

However, I did struggle greatly with confidence as a child. Initially I went to a mainstream school where I was bullied, and the teachers didn’t know how to support me, so I was made to feel like I was abnormal and worthless. At such a young age that hit me deeply, so even when I was moved to a school for the visually impaired, it was a very gradual process to build my confidence up again. Over the years it’s improved a huge amount though, as I went on to make many friends, have fun new experiences, get good qualifications and a steady job, and I ultimately became very happy, independent and successful.

Moving to London more recently has boosted my confidence further still, as it’s opened up so many unexpected opportunities, even including TV and radio appearances and public speaking, which I would never have remotely considered in the past.

Glen appeared on Channel 5 News, discussing how businesses can improve their digital accessibility.

So, my life has changed massively and will continue to do so, as I’m always exploring the world around me and learning more about both myself and my capabilities. And by blogging about my experiences, one of the great outcomes is that parents of disabled children have given feedback to say they feel greatly reassured that their child has every chance of leading a happy, fulfilling life, even if things are hard early on. And I’m delighted by that. It’s great to be able to show that, with the right support, we can do pretty much anything and be our own superheroes.

My Favourite Superhero

Doctor Who. Being able to travel through time and space enables them to visit many wonderful places and meet interesting people, while heroically saving them in the process. The show is very inclusive and respectful of people’s differences, and in a 2018 episode they had a blind actress (Ellie Wallwork) playing a blind character, which was fantastic. The Master and the Daleks are great villains too. Alternatively, if we’re talking about superheroes who wear special suits and have superpowers, I’m a big fan of The Flash as well. And Dangermouse too, I’ve loved that show since my childhood.

Thank you Glen for raising awareness and sharing your story with my readers and me!

If you would like to stay up to date with Glen, then you can visit his blog, YouTube, Twitter, Facebook and Instagram!

16 thoughts on “The Reality of Aniridia & Nystagmus – Guest Post by Glen

  1. Reading this made me aware that I occasionally judge people who wear sunglasses inside without knowing why they have to. So many disabilities are invisible and your columns are making me much more aware of that reality. Thanks.

    Liked by 2 people

    1. Thanks for reading Elizabeth. Admittedly, I judged others too years ago, and now I have to do the same sometimes and it makes me feel guilty for my misjudgment 💚

      Liked by 2 people

  2. thanks to Glen for sharing.. it is so sad that we often hear of bullying in schools preventing mainstream schooling.
    My optician believes my nystagamus is improved by my having had shortsightedness corrected with single visions lenses; one eye being used for reading and the other for distance. As you say, the brain does learn such things. I dont need lenses now .. old age has made adjustments.
    I have always enjoyed Dr Who but the latest version is wonderful.

    Liked by 2 people

    1. Thank you Patsy, I’m glad you enjoyed it. 🙂 I’m pleased to hear that you were able to get help with your nystagmus. I’m really enjoying Doctor Who too, I’m very keen to see what the series finale has in store next weekend!

      Liked by 1 person

  3. Reblogged this on Well Eye Never and commented:
    I’m delighted to be featured in Ami’s Undercover Superhero blog, as part of her excellent series raising awareness of different disabilities! Check out my guest post about how I live with aniridia & nystagmus, and have a look through the other posts in the series too. Thank you for featuring me Ami! 🙂

    Liked by 1 person

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