Living With Aniridia

There are 2 conditions I’ve had since birth – Aniridia and Nystagmus – and I’ve written a post about each one. They can be frustrating and awkward sometimes, but because I’ve had them all my life, I’m used to them and have adapted to them as best I can. And they haven’t stopped me living a happy and successful life. These posts aren’t intended to be negative. I just want to describe the main effects they have on me.

So in this post, I’m going to discuss Aniridia. I’ve also made a video about it which you may find of interest.

Aniridia means I don’t have a fully-formed iris. The iris is the coloured ring around the pupil – what people refer to when they say they have certain colour eyes (blue, green, brown, whatever). So I don’t have an eye colour particularly, unless you want to call it black.

The iris has a purpose though, it’s not just there to look nice. It’s a muscle that controls the size of the pupil, to determine how much light enters your eye. So if it’s very bright, the iris will shrink the pupil to let in less light, so as not to blind you. And if it’s very dark, the pupil will expand to let in as much light as possible, to try and help you see things better.

The lack of an iris therefore means I can’t control how much light enters my eye. They do adjust a little, but nowhere near as quickly or effectively as for a normal-sighted person. So going from dark to light spaces or vice-versa, can be difficult.

Going outdoors into bright sunlight can be particularly frustrating. It’s not just the sun itself that bothers me, but all the surfaces that it bounces off – e.g. windows, and anything with a light colour like walls and pavements. They can all cause glare to hit me from all angles, which my eyes struggle to deal with. Things can get even worse if it’s recently been raining and then the sun comes out, because every surface that’s covered in a layer of water gets even more reflective.

If my eyes are tired, that makes it more difficult. And my eyes become even more sensitive if I’ve got a cold, or even if I’ve merely sneezed in the past few moments. The sinuses are close to the eyes, so they evidently have some kind of connection. In the worst cases, when the glare gets particularly bad, my eyes can start watering, which blurs my vision and just complicates things all the more.

Some days are better than others, depending on how my eyes are feeling, but for the majority of the time I manage well. I have anti-glare sunglasses that help a great deal. The green-tinted lenses help to eliminate a significant amount of the glare, more than other colours would. Of course, if it’s a very bright day, and if my eyes are in a particularly sensitive mood, there is only so much the glasses can do, so they don’t always eliminate the issues entirely. But they do take the worst of the glare away and make it an awful lot easier to get around.

It may not seem surprising that I wear sunglasses in bright sunlight – lots of normal people do, naturally. But I also wear them at times when other people don’t. Even if the sun isn’t very bright for normal-sighted people, it can still be necessary for me to wear them. The sun doesn’t even have to be visible in the sky – occasionally I’ll wear the sunglasses on cloudy days if I feel the need to, as there can still be some glare even then. The easiest days for me are grey, dull days, but I do much prefer going out in the sunshine like most people. As long as I have my glasses handy when I need them, it’s fine.

The effect of glare also extends to computer screens, where white backgrounds and other light colours glare constantly for me. So looking at those is very tiring and difficult. It was particularly bad on the bulky old CRT monitors, whose glassy screens had lots of glare, even reflecting the light from the room a bit. But it’s still a big problem with flat LCD screens as well. Light colours still glare. And it’s not a simple case of turning the brightness or contrast down, because that makes things harder to read in itself. I need things sharp and clear, with good contrast, to see them as well as possible.

Thankfully it’s easy enough to work around that using accessibility software. At work I use a Windows PC that has magnification software installed (better than what comes with Windows itself), whilst at home I use a Mac, which has decent accessibility features already built in. In both cases, I turn the screen to negative view, so all the colours become their opposites. All the white backgrounds turn black, and the black text on them becomes white. It’s a simple switch, but it makes things so much easier to read (which also helps for my other condition, Nystagmus). If you’re using a Mac, go to System Preferences > Accessibility > Display and click Invert Colors, and you’ll see how it looks for me. Takes a bit of getting used to if you’ve never used it before, but I like using it a lot.

It does make every other colour negative as well, which makes pictures look weird. But I use a simple keyboard shortcut to flick between negative and normal views, so I can look at images in their correct form whenever I need to. On my Mac, the keyboard shortcut is Ctrl+Alt+Cmd+8 (the three keys to the left of the spacebar, plus the number 8). If you try it and it doesn’t work, go to System Preferences > Keyboard > Shortcuts to turn it on.

It’s the reason I’ve picked a blog theme with a white background, precisely because I use my computer in negative mode, meaning to me it will appear black with white text when I’m posting to it.

I’ve been writing a lot about brightness and glare, but darkness is also a big issue as well. If I’m walking outside in the dark, it’s very difficult, and can be quite dangerous, walking along streets with little to no lighting. And even when there is lighting, the lack of daylight still means my overall view isn’t great. So I have to be very careful when it’s dark. I do avoid unlit streets when I can (as many people wisely do for safety reasons), but it is sometimes unavoidable.

Having a car with really bright headlights coming towards me can be tricky as well. Yes, it’s a massive help in telling me the car is there in the first place and helps them to see me, so they are a necessity. But the lights can effectively blind me for a moment, briefly masking the view of everything else, so I usually stand still until the car’s gone past.

Even in the daytime, going from the light outdoors into a relatively dimly-lit building also takes some adjustment, while my eyes try to get used to it. If the building’s well-lit then it’s not too bad sometimes, but other times it can be really difficult. Places like restaurants, pubs and clubs are good examples, as they can be quite dark compared to the outside world. If I’m going into such a place with someone, I’ll usually hold onto their shoulder so they can guide me in, until my eyes have adjusted sufficiently.

All that is basically how Aniridia affects me. It also affects distance vision and how easy it is to read things, but those are things I’ll talk about more in my Nystagmus post anyway. And, again, despite all the frustrations I mention, I do cope very well, so it’s not been a barrier to me.

So I hope you found that little insight interesting, thank you for reading it. Don’t forget to check my post about Living With Nystagmus too.

If you want more professional information and support about Aniridia, then I can particularly recommend Aniridia Network UK, Aniridia Europe, Aniridia Foundation International, Vision For Tomorrow and the Aniridic Family Facebook Group as starting points. Further links are available on my Sight Loss Resources Page.