How amazing are you? – Page 3

How amazing is Roger?

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.

Camera rules

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.

Colour contrast

If you want to get my attention, choose the colour of the object or word in contrast to the background.

Recognising people

Sorry, but unless I am expecting you, I am likely not to know who you are, even if you are friend or family.

Seeing steps

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.

Emotions

Sorry I can’t see the expression on your face so please make it clear how you feel.

My turn

I probably won’t know when it is my turn unless you make it clear to me.

Embarrassment

Nowadays, I am not at all embarrassed by my sight loss, but as a youngster it was very different.

Seeing Colours

I see colours really well but not shapes and outlines.

Worsening vision

I am conscious my sight is getting worse and I am taking steps to cope with all this.

Close up

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.

Competition

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.

How amazing is Poppy?

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?”

Poppy has ocular albinism, nystagmus, astigmatism. She needs to be approximately 1 metre away to see what normally sighted people can see from 6 metres. She never let’s anything stop her. She has just taken her grade 2 bbo ballet exam and grade 1 bbo modern dance exam. The highlight of her year so far has been competing with her dance team and, best of all, her fantastic dance teacher gave her a ballet solo, so she’s been busy picking a tutu.

How amazing is Nabin?

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?”

Nabin has had nystagmus since my birth. His vision is 6/36. He tells us he’s had many troubles at school. He always needed to ask the person sitting next to him what was written on the white board. He couldn’t join in with his friends at sports, because he couldn’t play as well as they could. But now Nabin is 20 years old and has just started a bachelor level course in computer engineering.

Good luck, Nabin!

How amazing is Hanna?

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?”

Today we introduce our friend, Hanna

Have you met Hanna? Hanna has congenital nystagmus and lives in Germany. She has been coming to the UK Nystagmus Network Open Day for a number of years and recently achieved her goal of setting up a German Nystagmus Network, too. It was incredibly hard work, but Hanna achieved it and now her own group is growing from strength to strength. Find out more about the German Nystagmus Network, here.

Hanna – we think you’re amazing!

How amazing is Calum?

Once again, 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 Calum’s story, by his Mum, Katie

Our son Calum is now ten years old and has congenital nystagmus.

When he was first diagnosed we were told his eyesight was so bad he wouldn’t be able to do so many things.

However over time Calum has proved everyone wrong. He attends mainstream school (with input from a visual impairment teacher), has a wide circle of friends and doesn’t let anything hold him back.

He loves cycling and swimming and takes part in duathlon classes and triathlon competitions within his school.

He also recently competed in a swimming gala.

And despite being told from very early on that he would never drive he loves cars, especially super cars! In fact when we are out driving and Calum spots a car he can name the make, model, engine size etc from a fair distance – quite an achievement!

I’m not saying things aren’t difficult for Calum and he does have to try harder with a lot of things but we are so proud of everything Calum has achieved so far!

Nystagmus Network: We look forward to seeing Calum on the real Mastermind in a few years’ time. His specialist subject? Super cars, of course!

If you would 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.

How amazing is Caitlin?

Once again, 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 Caitlin’s story:

Despite the difficulties of living with nystagmus, I have never let it hold me back. I took up opportunities for support during school and university and have worked hard to cope with life with a disability.

When I was 14, I achieved a black belt in kickboxing and came third in Scotland in 2013. I play the bagpipes and guitar. In 2015, I climbed Kilimanjaro to raise money for a children’s charity.

Now I’m 22. I graduated with a Law degree from the University of Glasgow in 2018. Since then, I’ve completed a postgrad in Professional Legal Practice.

Throughout university, I sought out opportunities to work with marginalised groups of people. I’ve worked with refugees, the LGBT community, the disabled community, and now I work with victims of sexual violence.

My career goal is to become a human rights lawyer, fighting for the rights of those with disabilities.

Anything is possible!

How amazing is Ben?

Once again, 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 Ben’s story, submitted by his Dad, Phillip:

Ben was told a few years ago he wouldn’t ride a bike or play golf, because of his eye condition!!! He learnt to ride his bike the next day and here he is about to play a team match at golf.

Well done, Ben!