Nystagmus Awareness Day – Page 4

A young child sitting at a table drawing.

Nystagmus isn’t catching – tell your friends!

The little girl in the picture has nystagmus. She is enjoying some drawing at a Nystagmus Network event some years ago. At the time she had just started school and thought it would help children like her if people understood nystagmus better. One of the first things she wanted other children to know was that nystagmus isn’t catching. She was worried that people wouldn’t want to be her friend.

She started to write a diary about her experiences at home and at school. Each diary entry began in the same way: “When I was a baby a doctor told my mum I was blind. I wasn’t blind, of course, but I did have nystagmus. Now I’m seven and I’ve still got nystagmus. This is how I see the world through wobbly eyes …” The diary was published in the Nystagmus Network newsletter, Focus.

That diary became the basis for the Nystagmus Network booklet for young children, ‘Wobbly Eyes’. This digital publication explains nystagmus in child-friendly language and gives children the words to talk about it themselves. It remains our most frequently downloaded information document.

Extract from the original diary published in FOCUS in September 1999

Yesterday at school some of the children in my class had to have a medical. They called my name out, so I had to go. First they tested our eyesight. I thought that was a bit silly, because they know I’ve got nystagmus. I could only see the big ‘H’ because the nurse was holding the chart too far away.

She asked me if I wore glasses and I said no. I was about to explain about my nystagmus, but she wasn’t listening. She just went on to the next person.

They gave me a letter to take home to my mum. She was cross, because the letter told her she had to take me to the optician straight away. I heard mum talking on the phone to the school nurse later on. She was still cross. She told them that Mr Calver* tests my eyes and that the school nurse doesn’t need to. I don’t think the school nurse really understands about nystagmus. But Mr Calver does, because he’s very clever.

*David Calver was at the time Consultant Paediatric Ophthalmologist at Guy’s and St Thomas’s Hospital.

Download your copy of Wobbly Eyes here

The front cover of the Nystagmus Network booklet for children, Wobbly Eyes

People’s perceptions of nystagmus and the impact of Covid-19

In November 2020, the Nystagmus Network shared news of a new research survey into people’s perceptions of nystagmus. The results have now been published.

The responses to the survey show that people with nystagmus tended to predict that the public would not think that the condition affects their daily lifestyle as much as it actually does.

It seems that members of the public had a greater understanding of challenges faced by individuals with nystagmus if they had met someone with nystagmus or if they had even heard of the condition.

This suggests that greater public awareness of the condition could be achieved through increased exposure of the condition through media and other online methods of promotion.

What this tells us, is that raising awareness of nystagmus is beneficial for everyone.

Future work
It is thought that further qualitative questionnaire studies regarding nystagmus could be carried out to identify specific issues that individuals with nystagmus have faced during lockdown and whether these are common to other disorders of vision.

Read the full summary of the survey results online here

Joel’s nystagmus story

For Nystagmus Awareness Day 2022 we are delighted to share Joel’s nystagmus story, in his own words:

What is nystagmus?

Not many people know what nystagmus is. The best way to describe it is movement of the eye without the will of the mind. The condition is characterised by uncontrollable eye movements from side to side, up and down, or round and round. The degree to which those eye movements affect your sight and quality of life varies from person to person. Everyone agrees – it’s a very difficult condition to describe.

I was born with nystagmus. I can see all around me, but not the detail and often not in focus. When I was younger, nystagmus was about second guessing. It was looking five times to focus when the average person could look just once. However, as my brain was having to constantly make the best guess about what I could see – the smallest visual clue was often enough to determine what I was looking at. As I’ve got older, I’ve learnt to see with my brain before my eyes, and my nystagmus has become less noticeable.

Living with nystagmus

Nowadays, I’m not embarrassed by my ‘dancing eyes’, but when I was younger it was very different. I was sometimes not allowed into clubs or pubs due to the bouncers thinking I was on drugs. And trying to make new friends when people notice ‘that weird thing your eyes do…’ is the icebreaker that I never wanted. I would also struggle to see facial cues or other gestures people were making. As a teenager I learnt that squinting at girls to see what (if any) facial cues they might be giving you is never attractive!

Although I’ve adapted to my disability, it still affects my day-to-day life. I can’t drive. I can tell when a car is coming, but I won’t catch the registration number.

I struggle to recognise faces from a distance (it doesn’t have to be that far); this creates a daily dilemma. Do I risk unintentionally blanking someone that I know or risk staring at someone I don’t know (and only realising this at the last moment)? My mood dictates how I manage this conundrum. If I’m feeling introverted, I look downwards when I walk and glance upwards at the last moment to see if I recognise the person. If I’m feeling sociable, I will say hello to absolutely everyone (and potentially make some new friends along the way!)

At work, I need to sit close to any presentations being made by colleagues. Focusing on text on the screen can be tiring after a while so I have a large monitor and take regular screen breaks. My nystagmus is also a meter for how tired and stressed I am. When I’m relaxed the rapid eye movement reduces.

What I’ve gained from nystagmus

Nystagmus is a weakness that became my biggest strength. It has taught me how to overcome the odds and find creative and inventive ways to make the seemingly impossible, possible.

My ability to see things differently helped me secure my first professional job: an advertising creative at Saatchi and Saatchi. And it has helped me in many different ways since. From writing comedy sketches for BBC radio to leading an award-winning Her Majesty’s Government programme to help more disabled people enter political life.

Nystagmus has meant I’ve always had to work 10 times harder than most other people; it’s made me who I am today. I was the first person in my family to attend university and secure a leadership position in a white-collar job.

Nystagmus has also created a magical resolve within me that ensures I never stop trying. I submitted over 250 unsuccessful applications before getting my first real job opportunity. But when people have given me opportunities, the work ethic instilled into me by nystagmus has meant I’ve always repaid their faith. And that has led to many amazing adventures in the UK, Canada, Brazil, Indonesia and Azerbaijan.

Nystagmus is ‘normal’ for me, so I’ve never written about it before. However, my three-year-old daughter was also born with nystagmus and I know the challenges and discrimination she might face. If I can help increase awareness of the condition, perhaps her journey will be a little less bumpy in the years ahead.

Thank you to Joel and his Mum, Joan for sharing this personal nystagmus story

To share your nystagmus story, please contact us

An Illustration of a vwery colourful friendly monster. He is green. He wears pink polka dot pyjamas and fluffy red slippers.

Kevin the Monster comes to life

Did you know that a very special group of young people with nystagmus have helped children’s author, Tim Pearce create a character for his brand new book, Secret Agent Striker Strikes Back?

Tim was kind enough to run a children’s story writing workshop for us last year. Tim and the children created a story and a brand new character together. That colourful character was Kevin the Monster. Here’s how it happened, by Tim:

“In May 2021, I had the pleasure of sitting down with an amazing charity called Nystagmus Network for a ‘meet the author’ event.

The love and positivity the children displayed throughout the story showed that we should treat everyone the same, regardless of differences. I am proud to have had the opportunity to have written this story with them and would like to say a massive thank you to Ameerah, Oscar, Hannah, Josh and Abbie, along with the other children who contributed to the story.” – Tim Pearce

Kevin has been brought to life from the children’s imaginations by Tim’s regular illustrator, Jodie Dowie.

Here’s what we think of Kevin.

“Very colourful, fun rainbow horns. It’s great to see our ideas put together.“ – Ameerah

“Please thank Jodie for this fantastic illustration! The colours are so vibrant and eye catching and I love the cave with all the little details. He looks actually very friendly and approachable in his eyes despite his giant size and appearance. Perfect!” – Karen Chu, Trustee

“Oh, my goodness the slippers!!! Kevin is truly amazing. The children will LOVE him!” Sue, Nystagmus Network

The book costs £7.99, includes the above image of Kevin the monster and an acknowledgement of the children from Tim and is in nystagmus friendly large print.

Order Secret Agent Striker Strikes Back from Smile Amazon here

Raindrops on World Book Day

In celebration of World Book Day 2022, we are pleased to announce the publication of the Raindrops story book.

This digital publication includes the winning stories, inspired by raindrops, written by Annabelle, Eliana, Harry and Daria. Read what our esteemed judges thought of their Nystagmus Awareness Day 2021 competition entries and the drawings submitted by Nerea, Myles, Alishba and Luca.

Download your free copy of the Raindrops story book here

With thanks to all the children who took part in the competition, to Josh for the inspiration, to our judges: Tim Pearce, Katherine Mengardon and Nadine Neckles, to children’s authors, Tim Pearce, Helen Rutter and Claire Alexander for their inspirational writing workshops, to our generous sponsors for the prizes and to Nick for designing the book for us.

Edwin smiles for the camera. He is wearing dark glasses, leather gloves and a bandana.

How amazing is Edwin?

I was born with CN and for the most part consider myself to be lucky compared to many in our group.

Service to others has been a significant part of my life.

Recently, as Chief of Staff of my state’s second largest agency I was responsible for leading the development of a comprehensive employee wellness program. This program has become a model for other agencies like mine nationwide.

In addition, I lead the effort to develop a CQI process that saved state taxpayers millions of dollars.

Our agency’s employees’ commitment to helping others resulted in raising hundreds of thousands of dollars for Special Olympics athletes during my tenure.

One of my biggest joys is riding my Harley Davidson.

Our challenge is to not accept the limitations others set for us, and strive to be the best we can be!

Share your amazing nystagmus success story with us at [email protected]

Wyatt smiles for the camera. He is wearing headphones and holding a games console.

How amazing is Wyatt?

Wyatt has always had this positive outlook. He is determined, smart, and gives EVERYTHING his all!

When he was 4 months old he was diagnosed with Nystagmus. We as parents were told that he would never ride a bike, play sports, or even read a book. Everything he would do would be a challenge for him.

With that, my husband and I encouraged Wyatt. Whatever his passion he always tried. He always gave it 110% and succeeded!

Wyatt is 9 now. He loves his bike, rollerblades, driving the go-kart and his FAVOURITE thing to do is sit down and read a good book!

Words cannot describe how great Wyatt is doing! I can’t wait to see what the future holds for him!

Grayson enjoys a rope swing by a lake. He is wearing dark glasses.

How amazing is Grayson?

I am Grayson and I am 5 on 18 June. I have Ocular Albinism and Nystagmus. When I started school in September, I was very scared and very nervous and was very sad because I was lonely and didn’t have any friends. I have now met lots of new friends and even learnt to write my name and read some small words. One thing that makes me sad about my Nystagmus is not being able to drive my own car but my Sissy said she is going to buy a Tesla in black when she is a grown up and drive me everywhere, so that makes me really happy.

Note from Mum:

Grayson is so kind and loving with a heart of pure gold. They broke the mould with him. I could burst with pride at the obstacles he faces but is never held back. He really is an amazing little boy. The best. It just goes to show if you believe in yourself, you can achieve anything. He is our very own little Champ.

Share your amazing nystagmus success story with us at [email protected]

Poppy wears dance training gear and poses beside a banner.

How amazing is Poppy?

My name is Poppy. I’m 11 years old. I was diagnosed with nystagmus when I was 2 months old. I never allow my nystagmus to hold me back. I love dancing at the Lynsey Allen school of ballet and I also love horse riding.

I’m so nervous to be starting high school in September (lots of stairs!) but I know I’ll be fine when I get there.

Before lockdown I competed in my first dance competition and first ever knockout round and absolutely loved every minute, although it was difficult to pick up choreography with so many people (I tried). I’m so glad that our dance classes have started back as this is my escape, if only for a couple of hours.

I just want to let others know you can do anything and be anything you want. You are unstoppable.

To share your amazing nystagmus success story, please email [email protected]

A Nystagmus Network scented candle held in someone's hands. The candle is not lit.

Special edition scented candle raises funds for the Nystagmus Network

This lovely scented candle is specially created for the Nystagmus Network by Oli at No. 14 The Wick to celebrate Nystagmus Awareness Day 2021. The scent is Bergamot and Sage using a blend of essential and fragrance oils.

The oils have been chosen for the following aromatherapy attributes.

BERGAMOT – Uplifting and refreshing. Reduces stress and anxiety

SAGE – Stimulating and soothing. Helps clarify the mind and promotes attentiveness

Oli says: “I wanted to play on the meaning of ‘sage’ too. As in, ‘someone who is wise and has attained this wisdom through experience’. I felt this embodied the charity and all that is stands for in sharing it’s knowledge, advice and support to its members.

“Clarity is something that the charity provided for me when our children were first diagnosed with nystagmus and the support provided certainly helped us through some difficult or challenging times.

“Most of all I wanted to capture a fragrance that was uplifting and positive which is something we always feel when we meet our Nystagmus Network family. Knowing we are not alone and that there is advice or support from a ‘wise sage’ if needed.”

Love and light, Oli x

Product Details:

220g soy wax candle

Approx. 40 hour burn-time

Matt White glass container

Order your candle here

Sorry, but we can only ship candles to UK destinations