Nystagmus Awareness Day – Page 8

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.”

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 Claire?

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?”

Claire is doing a fundraising tandem sky dive for the Nystagmus Network this summer, because she and her son both have nystagmus.

This is going to make her son even more proud of his Mum!

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!

Mike explains nystagmus and benefits at Open Day.

How amazing is Mike?

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?”

For those of you who don’t know Mike, he’s a hugely valued member of the Nystagmus Network team. He’s our volunteer benefits adviser and the fount of all knowledge when it comes to nystagmus, DLA and PIP.

Mike has helped 100s, if not 1000s of people apply for benefits, whether they’ve sought his advice on applications or appeals, attended his enormously popular Open Day workshops or simply downloaded our free guide to nystagmus and benefits, which Mike writes and updates for us each year.

Mike has nystagmus himself, but doesn’t let it stop him from pursuing his career as a professional benefits adviser, volunteering and just being a Dad.

So Happy Father’s Day, Mike and thank you for all you do.

How amazing is Phebe?

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 Phebe tells her own nystagmus story.

“My name is Phebe and I am graduating tomorrow from the 5th grade. I love to play soccer, lacrosse, tennis and ski. I also love to hang out with my friends, sing and act. I am going to be a famous actor one day.

‘I have nystagmus. Sometimes it’s hard for me to see the smart board, recognise people’s faces, see when the sun is shining bright, but I don’t let that stop me from doing what I want to do. I am my own advocate at school. I just tell the teacher when I need to take a break and rest my eyes or I need to move my seat to see better.

‘Nystagmus doesn’t hold me back.”

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.

Our Manchester Event

Manchester Royal Eye Hospital is holding a Nystagmus Awareness
afternoon filled with fun activities for children and young people, as well as
information for parents, carers and families of children with nystagmus.
Guests from the Nystagmus Network include the charity’s volunteer benefits adviser, Mike Hughes and trustee, Marie Turnbull who will be available for discussions and to provide information.
Staff from Henshaws will be present to offer support and demonstrate tools
and aids, and staff members from Manchester Royal Eye Hospital’s
optometry and orthoptic departments will also be on hand to talk about their services.

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!