In the run up to Nystagmus Awareness Day on 20 June, we’re celebrating all your success stories in our campaign “How amazing are you?”
Here’s a story we just had to share. When Roger contacted us he began by saying “I have enjoyed Nystagmus for nearly 80 years.” We were hooked. Roger went on to describe how nystagmus affects him and he wants to encourage others to do the same so that everyone knows what it’s like. What better way to raise awareness of nystagmus?
Please read Roger’s description of his nystagmus and then scroll down to enter our ‘wobbly week’ competition.
This is me – Maximising minimal vision
What I see depends as much on my brain as my eye defect
My brain constantly makes the best guess about what I see. The smallest visual clue can be enough for me to guess/know what I am looking at.
I get tired, looking
It’s hard work with so few clues and so much effort and I get quickly tired trying to sort the detail, especially with reading print and close work.
I see best with the light source behind me without shadow, nothing dazzly in front. I need to move my head a lot to get the delicate focus right.
If you want to get my attention, choose the colour of the object or word in contrast to the background.
Sorry, but unless I am expecting you, I am likely not to know who you are, even if you are friend or family.
I might see steps up, but not steps down so please brightly mark step edges if you don’t want to be the cause of my fall.
Changes in light level
Be aware my level of seeing could suddenly change for the worse when moving from one situation to another.
Writing to me
I can read clear bold print this big (24 font) for a little while but not joined up or handwriting.
Sorry I can’t see the expression on your face so please make it clear how you feel.
I probably won’t know when it is my turn unless you make it clear to me.
Nowadays, I am not at all embarrassed by my sight loss, but as a youngster it was very different.
I see colours really well but not shapes and outlines.
I am conscious my sight is getting worse and I am taking steps to cope with all this.
Close to my nose and with a powerful magnifying glass, I see more detail.
Dual sensory loss
More and more I experience a kind of sensory bombardment which is quite disturbing.
Inspired by Roger, we’re running a wobbly week competition asking you to describe your nystagmus in just a few words. For a chance to win some fabulous prizes, please enter the competition, here.
If you’d like to share your amazing nystagmus story, please contact us today. To help the Nystagmus Network support even more people to reach their amazing potential, please consider making a donation. Thank you.