Nystagmus Awareness Day 2022

Hello all,

Happy Nystagmus Awareness Day!

What is Nystagmus?
“Nystagmus is a complex eye condition, characterised by involuntary eye movements, from side to side, up and down or round and round. This affects the ability to focus, see the world in three dimensions and recognise faces.” Nystagmus Network.

How does it affect me?

For people with Nystagmus they have something called a null point which is a point at which they can hold their heads to reduce the amount of wobbling their eye does. Nice and simple… not really. It doesn’t stop the eye from wobbling and for myself this causes other problems, linked with Scoliosis.

If I have to hold my head at a certain angle to be able to reduce the eye wobble and try focus on something my neck will start to hurt. Which then spreads into my shoulder and then my back. This null point is not in keeping with what my posture needs to reduce the constant pain of Scoliosis. Therefore I just have to make the most of a bad situation.

How I see.

One thing which I think people would be interested to know is, what does the world look like to me? 

See the difference? It is as though there is constant motion and nothing ever stands still. I describe it to people like this ‘Imagine you have a terrible headache and you are stood up on a roundabout which is spinning. Then add to that by having to move around on the roundabout and stay stood up.

Does your head hurt? I know mine does.

Another problem for those of us who have Nystagmus is that we struggle to recognise faces. For children this can be stressful because if they can’t locate their parent in a crowd, they become stressed or panic.
This problem of recognising faces does not go away or improve as you get older. When I am out meeting friends I cannot see them until they are a few feet in front of me. Even then I may not be able to tell it is them.

How can you help someone with Nystagmus?
You can send them written information in formats they find accessible, meaning large font, or in a preferred colour. You can let them know in advance what coloured jacket you are wearing when you meet up. Or say exactly where you will meet them.

If you have any questions about Nystagmus you can drop them below and I can answer from my own perspective. Please check out Nystagmus Network for more details.

They have a wealth of information and they are really beneficial.

Remember you can follow me on Twitter @PhilippaB.