Posts – Page 5 – Nystagmus Network

How amazing is Jane?

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?”

Jane believes that having a sense of humour really helps. Here she tells her story:

“My name is Jane and I have idiopathic, congenital nystagmus. My wobbly eyes have given me challenges, but have also made me determined and given me a sense of humour.

‘I have a degree in Library and Information Management and have worked in libraries for over 20 years.

‘I have never driven, but my experiences on public transport have given me plenty to talk about.

‘I have 2 beautiful, fabulous children. My son always introduces me by saying “this is my Mum and she is a bit blind”.

‘My cane is called Fred and he gives me independence. He’s also an excellent aid to dusting if I tie a cloth on him. I once used him to rescue an escaping helium balloon and cheated on my brother’s Easter egg hunt by poking eggs from high places.

‘So like any person, I get on with it and smile. Where there’s a will there’s a way and I get by with a little help from my friends and family.”

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 Alfie?

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?”

To his parents, Alfie truly is AMAZING.

Here’s what they have to say about him …

“As well as having nystagmus, Alfie also has FEVR, a progressive eye condition that affects only 1 in 100,000. He is blind in one eye, with 6/60 vision in the other eye.

‘It was always Alfie’s dream to go to grammar school, once he found out that was where the ‘clever boys’ went.

‘Alfie recently passed his 11+ and has gained a grammar school place. Out of over 5,000 children who sat the test in Essex, he was the only one with VI. Overall he came within the top 2% of all scores and is going to a school with only 120 in catchment places on offer.

‘Alfie also passed ski school in France again this year with flying colours, with the same instructor telling him he should apply to start training to be a Paralympian skier.

‘Alfie hasn’t let anything stand in his way and has achieved what he set out to do. Now he wants to study to become an Eye Doctor. To say we are proud is an understatement.”

Our wobbly week competition

It’s wobbly week! And it’s Nystagmus Awareness Day this Thursday, 20 June.

We want to raise as much awareness of nystagmus as possible and make sure that everyone has a chance to take part, so today we’re launching our wobbly week competition:

Nystagmus is …

Following on from Roger’s amazing description of his nystagmus, we want you to tell us what it’s like to have nystagmus – for you. So whether you’re young or a little older, whether you have congenital or acquired nystagmus and wherever you are in the world we want to hear from you.

PRIZES

There will be 1 adult winner and 1 child winner of our competition, with a choice of fabulous prizes on offer, including free membership of the Nystagmus Network for one year, a free place at Open Day 2019 in Cardiff, a T-shirt in your size and a knitted Nystagmus Network mascot.

All entries will be compiled into a brand new digital publication which will be free to download from our online shop at the end of the year, helping us continue to raise awareness of nystagmus well beyond wobbly week.

How to enter

Please complete the form below to enter our wobbly week competition.

Closing date: Sunday 23 June.

Good luck!

How amazing is Ursula?

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 Ursula shares her own amazing story.

Hi guys! I just wanted to share my story with you as this may give other people with nystagmus, or parents that have children with the condition, hope.

My Mum didn’t understand nystagmus and just thought I had wobbly eyes. The optometrist told her I would grow out of it (hahaha) and I was never checked up on again.

I didn’t understand what it was, and neither did my Mum, so I didn’t get any help through school at all and ended up leaving early because I was bullied (for other things, not my nystagmus).

I have lived a very normal life! It’s important to be correctly diagnosed, but it has also been a blessing because I never felt any different and just got on with my life.

I’ve never been held back doing anything. I went to college and did my GCSEs and A levels (without ANY help from the education system, or any extra exam time) and I am now studying online to become a level 3 personal trainer.

Alongside this, I’ve been a shift manager in a very busy coffee shop (Prêt a Manger) for the last 4 years and I am also a bikini fitness competitor.

Also, today, the hospital told me my vision is good enough to legally drive!!!! WHICH IS AMAZING!

Nystagmus is not a life ruiner. I’m not saying I don’t have any side effects from it. I can get dizzy, struggle to focus and night times are particularly hard for me, but I have just always got on with it, put out positive vibes to the universe and it has always rewarded me.

Never feel alone.

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.

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!

Sight Loss Councils survey

A guest post:

Sight Loss Councils have a vision for change – we want blind and partially sighted people to have access to goods and services at the same level as everybody else.

We want to know what you really think about the accessibility of services offered to blind and partially sighted people in your local area. We will use your collective opinions to challenge service providers and work with them to provide more inclusive services. The survey focuses on the themes of Education, Employment, Health and Social Care, Sport and Leisure, Technology and Transport.

The survey has been accessibility tested for both phones and PCs and should only take 10-20 mins to complete. It will be open from 1 – 28 June 2019. If you need any assistance completing the survey or wish to contact us for further information please email [email protected]

Help us to make change, tell us what you think, click on this link .

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.