Jan is smiling for the camera, wearing glasses, a pink blouse and a patterned scarf

Jan’s 1984 Story

I grew up knowing I was short-sighted but, other than that, I had a pretty normal childhood in a family with five brothers and two sisters.

In school, I sat at the front of the class and was teased a lot as I struggled with ball sports.  I always thought that if I just tried harder, I’d get better.  Unfortunately, that never happened.  Instead, I took up gymnastics.

In 1984 I was living in London.  I’d traveled from New Zealand five years earlier, eager to explore what the UK and Europe had to offer.

That year, at age 33, I learned for the first time that my short-sightedness was due to nystagmus and albinism.

I received this new and “eye-opening” information when I was a patient at the London Refraction Hospital (now the Institute of Optometry).  As a teaching hospital, students were eager to inform and discuss; I learned so much during those appointments.  It was at one of those appointments that I heard about a new group for people with nystagmus.  I went to the inaugural meeting, where I discovered there were other people like me.  It was very liberating.

I never imagined that the small group who met that night forty years ago would grow into the organisation that Nystagmus Network is today, helping and educating so many.

In 1986, my husband and I moved down to Cornwall, where we purchased a small tearooms.  I’ve always enjoyed baking, so baking cakes and serving cream teas was right up my alley.   Three years later we moved to New Zealand.

This meant I wasn’t able to contribute to Nystagmus Network as much as I would have liked.  However, I am grateful for the part they have played in liberating me from myself.  I’m now happy to talk about my visual challenges, something I never did when I was younger.

I am also grateful for the continuing Zoom meetups, which keep me connected from the other side of the world.

Marsha wears a floral top and a denim jacket. She is standing in a garden by a hedge.

Marsha’s message for Nystagmus Awareness Day 2024

Thank you to Marsha de Cordova for taking a few moments out of her busy schedule to celebrate with us Nystagmus Awareness Day 2024 in our Ruby Year.

Watch Marsha’s message on our YouTube channel here

Drew is wearing glasses and is smiling for the camera holding a steering wheel. In the background there is a rally car.

Drew’s Story

My name is Drew. Some may know me as DrewpyDesigns. I was born with albinism and nystagmus, but that’s not my full story. I’m a three-time TTT champion, self-employed as a graphic designer, a streamer, a content creator and an ambassador for Speed Of Sight. I have never let my disability stop me, and I urge others to live their lives without letting a disability stop their dreams too.

Throughout my younger years in school, I was always teased and bullied. People would point out my eyes or head wobbling. I always felt left out as I struggled in sports or couldn’t see my friends during break. This was hard at first, but I have since realised it taught me to never be fearful of my disability; otherwise, I’d never achieve anything. Even now, if someone says something about my eyes, I take time to explain to them why my eyes are the way they are and that I have no control over it. Awareness and understanding are vital in stamping out misconceptions and prejudice.

As previously mentioned, I am a three-time champion in Gran Turismo 7 in TinyTurnip’s Twisted Trackdays, a racing championship with some of the best online racers competing against each other. I’m a huge motorsport fan and sadly, due to my visual impairment, I’ll never be able to get a driving licence. When I first started in TTT, I never thought I’d win a race, let alone three championships. But with determination and a lot of practice, I have been able to achieve this.

Another area I have always struggled with is reading, so you’d imagine streaming and reading comments would be a massive issue for me. However, thanks to technology and visual aids such as text-to-speech, streaming has become not only possible but a huge part of my life. In fact, during my streams, the TTS has become an important part of viewer engagement. We’ve named the voice Frankie and I often say I’m now the co-host in my own streams, with Frankie entertaining the viewers with her less-than-perfect pronunciation of certain words.

I’m a strong believer that no matter what someone’s situation is, if you work hard, stay true to your beliefs and embrace any obstacle on your path, you will get to where you desire.


Taylan is wearing a smart suit with a striped tie. He is smiling for the camera and standing outside in an open space.

Taylan’s Story

My name is Taylan. I’m 8 years old and I’m nearly 9.

My mummy was really worried when she found out I had nystagmus.

I have lots of hobbies and things I like to do, such as ecology club, Lego club, painting, playing the piano and nurture club where I play with my friends.

I go to breakfast club and play Uno.

At school, my favourite subjects are art, maths, PE and science.

I am doing the VICTA awards and I volunteered with the MET police and at the library for a day. I had a lot of fun.

I get help from a special teacher who teaches me to cross the road and another teacher comes to help me if I need assistance in lessons, like using a reading slope.

My teacher, Ms Rubie, lets me sit at the front. I like Ms Rubie.

I have nystagmus and I am happy.

Angela is wearing glasses and is smiling for the camera. There is text embedded into the photo that says 'Happy Nystagmus Awareness Day We all have our own story'.

Angela’s Story

I am in my 50s and in my generation, there was little awareness or support for people with nystagmus or their parents.

Growing up, I was always a clumsy child with NHS specs and name calling was involved. I knew I had something called nystagmus but thought it was just a term for poor eyesight.

I had no confidence and often found myself walking into the wrong room or talking to the wrong people. Throughout my awkward teenage years, I relied on memory to navigate, often not knowing where things were, especially computer screens and other locations. However, once shown, I could find my way around. I lacked the confidence to go to college or university, but spent my late teens and early adulthood like most people: I got married, had children and while my friends and family always knew I had poor eyesight, they didn’t realise the full extent of it.

It wasn’t until I had more time on my hands and started to struggle more (partly due to age) that I began to research my conditions: partial albinism, astigmatism and of course, nystagmus. I had a light bulb moment and realised that all the things I struggled with growing up were related to these conditions. I strongly recommend that people learn about their eye conditions. It is now so important that we talk about them, spread awareness and ask for help. It is encouraging that there is support available for younger generations through organisations like Nystagmus Network. Hopefully, they will not have the same lonely and sometimes isolated life that I had due to the lack of awareness and help. Please don’t get me wrong, I don’t wallow in self pity; I love my life—it’s just a bit harder at times.

The front cover of the Nystagmus Awareness Day 2024 digital programme featuring the Ruby Year logo and a collection of blue and red gem stones.

It’s nearly Nystagmus Awareness Day 2024

Make sure you’re ready to take part in Nystagmus Awareness Day 2024 on 20 June. Your FREE digital programme has all the information and links you need.

There’s the great nystagmus summer get together on Nystagmus Awareness Day itself, a whole load of resources to help you raise lots of awareness of nystagmus, a children’s colouring competition and a whole collection of personal stories from people living with nystagmus. AND … there’s even a bunting template.

Download your Nystagmus Awareness Day 2024 guide here

A young child wearing a purple paper crown and glasses is cuddling a blue toy and smiling for the camera.

Ruby’s Story

When Ruby was 9 months old I noticed one of her eyes shaking, which prompted me to visit our local optician. They informed me that they didn’t treat children that young and advised us to go to our local eye infirmary. From there everything is a blur, as we were taken from the eye infirmary to our local hospital and then to another hospital where we spent a few days. Words like cancer and tumours were thrown around as I think consultants and doctors were very worried that there could be something in her brain causing the eye wobble, which at this point had started in her other eye too.

Luckily, all of Ruby’s tests and MRI scan came back clear and she was eventually diagnosed with spasmus nutans. Appointments were arranged for Ruby to be seen by ophthalmologists at our local eye infirmary and we were relieved that the ordeal was over. Fast forward to the ophthalmologist appointment and we were informed that Ruby’s eye wobble was called nystagmus and she needed glasses to correct her vision.

We didn’t question anything. As a glasses wearer myself I thought her vision was probably like mine and that the glasses would correct it and she would see fine. Turns out that was not the case, as at Ruby’s next ophthalmology appointment we were asked if we’d like to register her as visually impaired. I think this came as a shock to me and her dad as up until this point we hadn’t questioned what nystagmus was or her ability to see.

A lot more appointments followed with geneticists and paediatricians. The genetic testing came back with only one fault in a gene, but luckily our geneticist got us on a pilot RNA testing scheme which eventually came back and confirmed that there are actually 2 faults in the CEP290 gene and that Ruby has Leber Congenital Amaurosis (LCA). Ruby’s peripheral vision and colour vision is affected by LCA, she has nystagmus and photophobia.

The diagnosis and journey so far has been really tough, but being able to turn to charities like the Nystagmus Network and Guide Dogs has been amazing for us. Looking through your website and social media has enabled us (Ruby’s parents) to see that a diagnosis of vision loss isn’t the end of the world and that Ruby will be able to live a fulfilling and happy life, just as anyone would want for their child.

Ruby has just turned 5 and started Reception in September 2023, which she is loving! Her favourite colour is purple. She loves the BBC TV show Dog Squad and can’t wait till she can get a guide dog. She thinks they are amazing. She has a cane called “Poppy the Flower” which she often takes to school (although all her friends always want a try so she doesn’t do it often). And even though she has many trips and bumps (nearly every day) she is determined to keep up with everyone else and doesn’t let anything get in her way.


Peter smiles for the camera. He is wearing a purple shirt.

Peter’s nystagmus story

Peter’s nystagmus story comes in the form of a poem.

Thank you for sharing, Peter

And the boy inside me still cries

Something is wrong with my eyes.

At birth the angels left a rare mark, 

and the boy inside me still cries.

My parents searched for whys.

Is he blind? Will his world be dark?

Something is wrong with my eyes.

There’s no cure, the doctors advise,

his life will follow a difficult arc,

and the boy inside me still cries.

Bullied and bruised, I wore a disguise,

to shield me from stares and remarks.

Something is wrong with my eyes.

I found ways to cope and improvise,

quelling the urge to end my life’s walk,

and the boy inside me still cries.

It’s been six decades now. I seldom sigh.  

What I can do is my trademark.

Something is wrong with my eyes,

and the boy inside me still cries.

Mason is sitting on the floor of a sports hall holding a water bottle.

Mason’s nystagmus story

For Nystagmus Awareness Day 2023 we invited members of the nystagmus community to share their story to help people in the wider population to understand the condition.

Thank you to everyone who shared their story with us.

You can read all our nystagmus stories here

This is Mason’s story …

We first noticed Mason’s eye movement when he was around 8-10 weeks old. His eyes would jerk to the right. My elder brother also has quite severe nystagmus so instantly my gut instinct told me it was nystagmus, however I just never considered that my children would have it as I don’t have it myself, although my mum has very mild nystagmus. As Mason was born at 35 weeks and had some trauma surrounding his brain, we already had an extra eye and hearing test booked in. This meant we were fast tracked for an appointment which we were extremely grateful for! The Ophthalmologist clinically confirmed it – congenital jerk nystagmus. 

The first year of his life left us in constant worry about how he’d struggle to meet milestones. Would he be a late walker? Would he be able to drive when he’s older? However, as time has gone by, he’s really shown us just how determined he is to not let his eyes stop him from doing everything he wants. He began to walk around 15 months and now at the age of 2 he doesn’t stop running! His confidence can sometimes be a bit knocked down when exploring new, big places with a lot to take in, but generally he is fine once shown around and how to access what’s around him. 

We see a Visually Impaired teacher on a regular basis who will support him in nursery and school. She is just amazed at how able he is. His eyesight is incredible and he often spots things before I do! He does have a very mild prescription for glasses, but being the crazy active toddler he is, he won’t wear them and is more than happy to go without at his own choice. 

He loves kicking a ball about, loves playing with his cars, loves being outdoors and loves spending time with family. 

Personally, I don’t know what life with nystagmus is like, but I do know that with the right mindset and determination it can’t stop you from doing what you love. Everyday my little boy makes me so incredibly proud; his achievements motivate me to be the best I can too. 

Gemma smiles for the camera. She has long, very fair hair and wears a dark top and necklace.

Gemma’s nystagmus story

To help raise awareness and understanding of nystagmus, we;re sharing all your stories this Nystagmus Awareness Day.

You can share your story here

This is Gemma’s story …

My name is Gemma and I am 38 years old. I have congenital nystagmus. I have 3 children whose vision is perfect so I know I haven’t passed it down to them. 

When I was younger nystagmus wasn’t well known and I spent a lot of my childhood visiting the opticians, going to the eye hospital and being given glasses for short sightedness which made no difference. I held everything close up to see and managed school by copying off the child next to me. My hair was white and I have a very pale complexion so I think doctors thought my vision was likely to be down to albinism. I was told as my hair got darker as I got older my eyes would get better … it did not. 

After starting secondary school I had to ask the teacher to read off the board what they were writing so a lot of my school work was done by memorising what they said. Every subject I took further were all practical subjects so art, drama, dance. I went to university and completed a theatre and performance degree. 

I always knew I wouldn’t be able to drive so it’s never really bothered me. I’ve always got by one way or another. 

At the age of 17 I was diagnosed with nystagmus and was classed as partially sighted. At the age of 30 I was then classed as severely sight impaired/blind.

I worked in schools as a learning mentor and a teaching assistant and went on to complete my PGCE to teach. Teaching wasn’t for me and I went on to secure a job as Quality of Education Manager and SENDCo for a large day nursery. I absolutely love my job.

I have always had barrels of confidence and take pride in how much I have achieved despite my visual impairment. There’s a solution to every problem.