Claire and her Father, Richard are smiling for the camera. Claire is wearing a mortarboard at her graduation.

Claire’s 1984 Story

On New Year’s Eve 1984 my parents went on their first date. And I guess that’s where my nystagmus story begins.

My Dad had Nystagmus from birth but it wasn’t until 1992, when I was also diagnosed, that he heard about the Nystagmus Network and learned more about our shared visual impairment.

Unlike many people, I was in the fortunate position growing up of always knowing someone else with Nystagmus, and my Dad was a brilliant role model for not letting his Nystagmus hold him back!

We attended many Nystagmus Network open days together over the years and always enjoyed meeting others with Nystagmus and hearing about their experiences. I’m a bit of a geek and love hearing about the science and research side of things too! Dad (Richard Wilson OBE) took his involvement with NN to the next level by becoming a trustee and then Chairman of the charity. Sadly Dad passed away last year but I’m sure he wouldn’t mind me sharing our story.

This year the next chapter in my story began when my 5 month old son was also diagnosed with Nystagmus. We won’t really know how much it will affect him until he’s a bit older but I am ready to be his biggest cheerleader and learn more about Nystagmus as a parent. In some ways it’s a nice link back to Dad and my son will grow up hearing lots of stories of his Grandad, who also had wobbly eyes just like him and Mummy.


Trish is smiling for the camera and has long light coloured hair

Patricia’s Story

My name is Trish (Patricia). I was born in 1956. Nystagmus was virtually unknown back then. My parents struggled to keep me in mainstream school and I faced many challenges including bullies and unkind kids.

Teachers believed that wearing glasses would fix my vision issues, which showed their ignorance. Life was tough during primary and secondary school and even local GPs didn’t understand my condition. It’s sad that we live in such an uneducated world.

I have never claimed any disability allowance and just got on with life. I have worked all my life, had a successful career as a manager at Tesco and earned CIPD qualifications in Personnel. I married an amazing guy, had two beautiful children and now have four wonderful grandchildren. Thankfully, none of them have my condition as I know how tough life would be for them.

I am happy but sad that I didn’t have the courage to stand up for myself. Maybe things would have been different if I had.

Glen proudly standing in front of a running track wearing a medal. He is wearing sunglasses and a bright yellow jacket.

Glen’s Story

I was diagnosed with nystagmus almost from birth and I had glasses from around 18 months. I attended regular state school and struggled to see, however my parents were keen to keep me in mainstream education against the eye specialists advice. I remember going to hospital appointments fairly frequently and my parents had to show examples of my school work to the consultant, to backup their opinion that I should remain in mainstream schooling.

When I was around 6 years old (around 1976) my parents paid for me to have some nicer glasses as opposed to the National Health glasses I had been provided with until them, these were the brown tortoise shell type (which are fashionable now!),  they had thin wire for the ear pieces, which after a few hours began to dig into the ears, becoming uncomfortable.

I loved my new shiny golden rimmed glasses, which I felt gave me more confidence. Then one bright sunny day in Norwich, I ran down a hill with my brother into to sun, and for me straight into a bin which was on a top of a post, which I clearly didn’t see. In those days the regular lenses were made of glass, plastic lenses were an expensive addition. Both lenses shattered and I was taken to the Norfolk and Norwich hospital where I remember nurse pouring a salty liquid into my eyes to remove any glass. Thankfully there was no lasting damage, only to my parents pocket to buy new glasses with plastic lenses. Looking back, it was probably the first time when I realised the bright sun had a detrimental effect on me.

By 1984 , I was 14 years old and attending a regular comprehensive school in Gt Yarmouth. I had to always ask to sit at the front of the class so I could see the blackboard. Most teachers after initially questioning me for the reasons were ok but some were just awkward. Sometimes there was not enough textbooks, so we had to share which I always struggled with.

Academically I was ok, the comprehensive system meant that we were placed in group sets according to our ability. There were five sets for each subject with set one being the top set for the brightest group. I was in the second set and holding my own. However, when it came to exams just before Christmas 1984, these were now timed more strictly in preparation for GCE’s and O Levels which would be in the summer of 1986.

I found this really tough and often struggled to finish the exam which meant I did not display my actual potential through no fault of my own. This trend continued until my actual exams where due to my results in the mock exams, I was entered for CSE exams instead of GSE or O Levels which I was actually capable of. The exams didn’t go too well as I struggled to finish the exams in the allotted time. And therefore did not fulfil my true potential.

Following my results, which considering I only finished one of the 10 exam papers,  due to not having enough time , I did ok. But I decided I had had enough of education and entered the world of work through the Youth Training Scheme (YTS). This went well and I was offered a full time position after the first year of working in medical records at the local hospital.

I first became aware of the Nystagmus Network following the birth of my daughter in 1997. From the first moments of seeing her we realised she also had Nystagmus. There was lots more support around by then and I remember the wobbly eyes book and the teddy bear with wobbly eyes too which we had for her.

At school my daughter had support from day one from the Local Education Authority. When it came to her exams and GCSE’s and later A levels and degree she always had 100% extra time to complete the exams. She achieved a First Class Honours degree in nursing and has worked as a nurses since then.

I eventually ended up becoming a civil servant where I’ve have worked for 24 years, doing various roles and gaining promotions. However, the road has not always been a smooth ride, as I’ve occasionally had to explain why I cannot complete as much work as my peers. Thankfully, things are improving with reasonable adjustments and assistive technology.

I have always enjoyed playing sports, and spent many years playing squash and badminton until my ankles would not allow anymore. I have always used a bicycle since being a child and I still use it to ride to work and my main mode of transport. After the end of my racquet sport days,  I began to cycle more and this became my main participation sport, however I realised in 2019 that I did not feel as safe cycling 50 or 60 miles on the roads, so I began running and doing parkruns.

Primarily, I wanted to give something back as I had had some eye vision issues which resulted in bad eye strain caused by my job and computer screen.

The 2019 Nystagmus awareness week,  parkrun were supporting the Nystagmus Network, so my aim was to to get running fit to be able to run the local parkrun on 22 June 2019 in the NN running vest, raise a bit of money for NN and quit running as I didn’t really like it.

Mission accomplished and awareness was raised of nystagmus with friends and colleagues at my workplace. The following week after I had quit running, I was again on the start line of the parkrun. And that’s where I have been for the majority of Saturdays at 9am since ( excluding the lockdowns).

To date I have completed 179 parkruns at 39 different locations, one in Denmark. I’ve completed numerous 5km races and this year I did my first 10km race in Gt Yarmouth and was happy to finish in under an hour. This year, I also competed the Gt Yarmouth 5 mile series for the 3rd year running,  this is three  5 mile races over a six week period.

Apart from parkruns and the races, I tend to run on my own, in places I am familiar with, however I do like travelling to different parkruns ( luckily my partner drives and also likes to go to parkruns) and having a look around the local area afterwards. I’m always a little apprehensive of running in new places, especially the off road parkruns where there are often tree roots to avoid, so I am always conscious to be more careful at these places. I also am not too keen on really busy parkruns, some have 400 + people, again I am always a bit more wary when at these events. The low sun is also a problem sometimes too.

I think running is good for me, and the parkrun community is very friendly and supportive wherever I have been, however, I’m still not sure if I really like running!

Flynn is smiling for the camera and is wearing glasses. He is standing in front of lots of greenery.

Flynn’s Story

This is Flynn. Flynn was diagnosed with congenital nystagmus at the age of 2. When Flynn was about 6 months old, our health visitor noticed something was not quite right. At first, we did not take much notice that his eyes vibrated and that he has a lazy left eye also. Our older son Alfie had nystagmus, but he grew out of it very quickly. We were also told he had albinism, but after being seen at Great Ormand Street he was diagnosed with congenital nystagmus. Flynn also has a strong head tilt to find his NULL point, which was always very alarming for us at first, but we are now so used to it it’s the norm. We are frequent visitors to the ophthalmology department and have an amazing team looking after him.

. He is now 5 and life is amazing. Flynn is only just realising that his eyes wobble and is asking lots of questions. The knowledge and information on this network has been amazing. It is making the discussions with him so much easier. He has the support from school and external people. Flynn has taken a real like to basketball recently and is doing amazing with it. Little slip ups and wobbles everyday but he is so resilient and it does not stop him what is so ever. Flynn is also light sensitive so has additional glasses to help with those brighter days. He loves telling people in class that he is super unique and special and that is why he sits closest to the board at school and all his friends just say it is okay Flynn.  Such a little legend as is all of you on this group, thank you all.

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.

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.

Vicky’s 1984 Story

My favourite subjects at secondary school in 1984 were hockey, music and maths.

Fast forward 40 years and those subjects still dominate my life. Professionally I’m Finance Director for an AI Consultancy and Treasurer for the Nystagmus Network. In my spare time I play flute for the local orchestra and spending time with my sports-mad family tends to revolve around various sporting events.

I didn’t know about the Nystagmus Network until at least 10 years later, thanks to Google and a curiosity to find out more about the eye condition I was born with that caused my eyes to wobble. All I knew until that point was that I couldn’t drive, would never be a pilot, had to sit at the front of a classroom to have any chance of seeing the board, and every now and then felt a little foolish for not recognising people in the street.

I was a quiet member of the charity for many years, enjoying the monthly newsletter and occasionally taking part in research. It wasn’t until I became a trustee that I first properly met other people with nystagmus, the wobbly eyes are a bit of giveaway when you know.

Harshal’s 1984 story

The year was 1984 and in a little corner of Middlesex, a baby boy was just starting to explore the world, especially a local park that our family home shared a fence with that had an excellent playground.

My memories, of course, don’t stretch back that far, but I can only imagine the world through the lens of a one-year-old. Perhaps I was busy stacking colorful plastic cups, chasing after a brightly colored ball that rolled just out of reach, or maybe I was mesmerized by the flashing lights of a Fisher-Price or Tomy toy powered by those unwieldy D-cell batteries. Little did I know, the year I began cooing and babbling would also mark the birth of the Nystagmus Network, an organization that would play a vital role in my life years down the line.

Fast forward 40 years, multiple house-moves across multiple continents and I find myself today with my own family, in exactly the same little corner of Middlesex…with exactly the same park from 40 years ago around the corner! However, I’m now not the one sitting in the swings (most of the time), it is my kids who are being pushed by me, on what I like to think/hope are the same swings I sat on all those years ago.

Unlike my involvement with the local park 40 years on, my involvement with Nystagmus Network only marks 1/10th of the charity’s life. It has, however, undoubtedly made a lasting impact on me and my family. What started off as a silent direct debit 4 years ago, transformed into volunteering and then as a fully fledged trustee a year or so after. I would like to think that the charity will still be around in another 40 years and that I will continue to play my part in many of those years ahead. More so, I hope I pass my enthusiasm for nystagmus research, support and awareness raising to the next generation in those years ahead, who may also be in a position to look back over another 40 years, when that time comes around again!

Happy Ruby Anniversary Nystagmus Network!