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
The Nystagmus Network logo and the words nystagmus research

Your nystagmus research questions answered – question 5

We asked a group of Nystagmus Network supporters what questions they would most like to put to nystagmus researchers. Then we found researchers to answer them.

Your questions were answered by Jay Self (JS), a Consultant Paediatric Ophthalmologist at University of Southampton and nystagmus researcher and Helena Lee (HL), a Consultant Ophthalmologist at University of Southampton and a nystagmus researcher

Question 5: What are nystagmus researchers currently focused on?

(JS) There are lots of different avenues. There is an element of ‘If you’ve only got a hammer, every problem looks like a nail’. What I mean by that is that I’ve got a background in genetics, so I will look at all the ways genetics can help with nystagmus. We both have a background in clinical trials, so we always look at ways we can test things. If you’re an eye movement person who’s done 30 years of eye movement research you’re always going to look for an eye movement avenue. There are different people with very different expertise. We really need to broaden the net, because there will be people whose research is based on a particular molecule and they’ll try and work out how that is relevant to nystagmus. The more people you have and the broader it is, what tends to happen is that things start to come together and you get collaborations. Or there’s a totally different avenue of science that none of us even knows about.

The work that the Nystagmus Network are doing to try and broaden it out with broad calls for research is a brilliant idea. You never know. You could get people coming in from a totally different angle which might seem crazy or we’ve just never heard of that technology and suddenly that’s the thing that unpicks one part of it.

There are lots of people doing lots of different things, but you can always get more. There are themes to the answer. Lots of people are looking at diagnostics. People like me from the genetics point of view. There are quite a few looking at the use of eye trackers to help with diagnostics. There are others focusing more on support and wellbeing. Then there’s the treatment group as well.

There are also people looking at other conditions, such as retinal dystrophy researchers. Nystagmus is a major part of their phenotype, but, if you asked the patients, they wouldn’t tell you they’ve got nystagmus, they’d say they’ve got RP or cone dystrophy, or whatever. The nystagmus is just considered part of it from their point of view.

When we go to American Nystagmus Network meetings everyone is joined together by their common nystagmus and actually nobody thinks beyond that or questions why their sight is particularly bad or another person’s really good. It’s because they’ve all got completely different conditions.

There are 3 different groups of patients with nystagmus. There are those with neurological problems of which there is a huge long list, not just the acquired nystagmus cases but also children born with various neurological conditions. Then there are the ones with significant eye problems. For example, anybody born with very poor vision will get nystagmus. Then there is the group where it’s a bit more mixed, where nystagmus is a part of it. In that group I include people with idiopathic nystagmus, subtle aniridic changes or albinism.

Research is still going on into the neurological causes. Neurologists would, however, probably be about 5 sentences in before they mentioned nystagmus, because it’s not considered the main part of the phenotype.

The Nystagmus Network is enormously grateful to Jay and Helena who gave up their time on a sunny Saturday afternoon to answer questions from the nystagmus community so openly and fully.

Monday Focus on Facebook

Every Monday over on our Facebook page we focus on a particular nystagmus-related topic to get the week started with a great conversation.

Topics we have covered so far have included null point surgery, driving and nystagmus, talking to you child about nystagmus and whether or not to have cataracts removed when you have nystagmus.

Anyone can join in the conversation and share their thoughts, questions, experience and point of view.


Mark’s story

I’m the youngest of three children and I think that helped a great deal in dealing with Nystagmus – at least I hope it did. Either that, or I was born into a group of eccentrics who somehow guided me through a foggy minefield to where I am now. I often wonder how it happened – luck or design?

My arrival back in the 60s was a great cause for celebration. My family had just moved from Dover to a market town nestled at the base of the South Downs. My brother and sister were two years apart and happy healthy children. My father had just accepted a promotion as a district engineer. They had a new house on a new estate and to top it off I was born.

Apparently I didn’t wreck the party. My sister remembers dad breaking the news to her on the way to the nursing home. ”He’s got something wrong with him, shall we send him back?” He was promptly whacked around the back of the head by my grandmother, who reminded him first to keep his eyes on the road and second, Aunt Jess had also had congenital nystagmus, “and she could play anything on the piano after a sherry”. That’s true, said Dad, “but that talent may not be enough to get him into the civil service or a cricket team”. Another tweak silenced him and my eyesight was never mentioned again.

Once I had been allowed home, I settled down to a long period of recumbent bliss. I was very happy and didn’t want to exert myself. I had blond spiky hair, a fat little face and a happy disposition. Dad would often get someone to poke me so he could capture a smile on his latest gadget, a 35mm cine camera. It wasn’t until after a year, when I still showed no signs of sitting up, that people started to worry. Dad complained that the films were getting boring and that there was a limit to how interesting a horizontal baby was.

Mum took a more practical view. I had all the tests of the day and saw doctors, specialists and health visitors. Sure enough, in my own time, I did eventually sit up, speak, eat and learn to walk. It was here I made my first big mistake. One Christmas, I picked up a discarded plastic ball from a cracker and threw it to my brother. My father’s face lit up with excitement and a huge grin spread across his face, fuelled by a seasonal eggnog. Mother sighed as my father reached for a cricket stump and held it aloft, brandishing it as some kind of ash light sabre. “That’s me lad!” he cried, as he knocked the fairy from the tree, lost his footing and collapsed into a plate of mince pies. My training as his young apprentice was about to begin.

Dad and Obi Wan did not have a lot in common. I’ve seen all the Star Wars films and I don’t recall the Jedi master ever calling Luke Skywalker a “fat head” or chastising him for avoiding a particularly nasty full toss. To be fair, I also don’t remember him giving Luke as many hugs, smiles and kisses as my father gave me. What they did have in common, however, was love, support and a willingness to let their young students live their lives and make their own mistakes.

It’s only with the birth of my children that I realise they must have been incredibly apprehensive about sending their youngest out into the world. True, they had some history of bringing up children, but now they were in uncharted waters. They never pushed me in to see if I sank or swam, they just encouraged me to paddle and watched from the shore.

All was bobbing along nicely until, by a disastrous series of events, I was picked for the school cricket team…

Sound tennis

have always enjoyed sport but often found that trying to take part was frustrating due to my nystagmus, particularly with sports that require seeing the movement of a ball and connecting with it. I tried tennis a few times when I was younger but it seemed impossible. I would never be able to play it.

In 2014, however, we started playing Sound Tennis in Brighton and Hove. Sound Tennis uses a spongy ball that can be heard when it bounces. Those with no or very limited vision (B1 & B2) are allowed 3 bounces. Partially sighted players (B3) are allowed 2 bounces. The extra bounce(s) allow more time to locate the ball. For me lighting conditions and colour contrast make a big difference so in some situations I rely more on hearing to tell where the ball is. Little did I realise how addictive the game would be. I learnt to serve, hit backhands and forehands and gradually hold rallies and hit winning shots.

My colleague, Christine Laurence, who also has nystagmus, had been travelling to London to play the game and contacted me to ask if I would be interested in helping to set up a local club. We organised a launch in February 2014 and were amazed that 29 people turned up, 19 of whom were visually impaired. Sound Tennis Sussex was off to a flying start.

Since then we have helped to set up groups in Shoreham and Eastbourne with others planned. A number of us have taken part in competitions in Newcastle and Cambridge and the National Visually Impaired Championship at the National Tennis Centre at Roehampton, London. We also organised a tournament against a team from London and held a friendly tournament with the Eastbourne club. In November 2015 we received the disability programme award from Tennis Sussex at a ceremony at the Amex stadium.

We have a number of players with nystagmus. The age-range of players is from children to the over 80s. Many like me have never been able to play a racket sport before, but others have been thrilled to find that they can continue or resume playing tennis after a diagnosis of sight loss.

Sound Tennis is growing fast in the UK and across the world and there are ambitions to get the sport into the Paralympics. There are a number of clubs in cities around the country where you can go along and give it a try. Visit www.soundtennissussex.org.uk to find out more.

Sophie Brown

Can people see past my wobbly eyes?

It’s a traumatic experience for parents when their baby is diagnosed with an unknown condition. Mine didn’t know what to do when the doctor told them that their little girl had nystagmus; but then what could they actually do?

It’s just one of those things. Yet it didn’t seem like that at the time. Even though my condition was congenital, the initial reaction wasn’t to consider that I wouldn’t know any different. Consequently they had no idea what to expect. Would it prevent me from leading a normal life and making friends?

I was brought up not to consider my visual impairment a disability, nor a negative characteristic that limited my activities. At a younger age I couldn’t care less that I was different. It didn’t bother me that I couldn’t ride a bike without stabilisers. My friends and I preferred playing Polly Pockets and going on the swings anyway. But that all changed when I hit the teenage years.

Makeup is something I was never fond of, apart from when I was seven. I attempted to crayon mine and my friends face for a party, but our parents wiped it off again. Then for my 13th birthday mum wrapped up eyeliner, mascara and numerous other makeup tools I never knew existed in a box, kind of like a ‘maturity package’.

The first time I ever applied mascara was in the school toilets. Every girl was wearing makeup apart from me so I decided to join in. Long story short, the mascara ended up everywhere except on my eyelashes. Unlike the other girls, I couldn’t judge where my eyelashes were in relation to the mascara brush. I’m sure you can imagine the response when I came out of the bathroom.

I remember lying on my trampoline next to my best friend the weekend after the mascara incident, commenting on how pretty she was. She returned the compliment, which I automatically brushed away; how could I be pretty when my eyes wobbled and I wore glasses? Plus all the girls at my school said that makeup made you more ‘beautifuller’ (yes I am aware that is not a word). So using their logic, I would never be their definition of beautiful.

Looking back on this now I realise it was complete and utter rubbish! But when you’re a teenage girl who is slightly different from her friends, it’s hard, especially at sleepovers when you’re the one falling asleep at 9pm when you vowed to stay awake all night; but true friends see past that.

Half way through my third year at school I moved classes due to the nasty digs some people I once called friends made on a regularbasis. Nothing was aimed directly at my eyesight, but the little things they did were, such as deliberately sitting in the middle row of the science lab knowing that I wouldn’t be able to see from there. To be honest, you don’t need people like that in your life.

The new set of friends I made were great. They taught me how to put mascara on for starters. They’d sit with me in the front row without me having to beg and plead with them. I was introduced to a larger group of their friends as well; a mixture of boys and girls. I was extremely wary of the boys at first, but once they started talking to me I got along with them just fine. In fact I now have more guy mates than girls!

There was one I particularly took a liking to and it turns out that we were ‘extra time buddies’ during our exams. He’s dyslexic; I have nystagmus. He can’t read; my eyes get tired reading. I’m still a book worm though! We were a match made in heaven/hell/ whichever way you want to look at it.

By the time we were in the fifth year of school we were officially a couple. Okay it took a lot of focusing and straining to try and stare into his eyes, but, on a brighter note, we won ‘The Cutest Couple’ award at prom!

Skip forward seven years (I feel so old) and my eyes have not had a negative effect on my life so far, just as my parents originally thought. Believe it or not, I can’t imagine life without wobbly eyes! They’ve made me see people’s true colours. If I didn’t have nystagmus I would probably still be friends with the first group of people I hung around with, but, let’s face it, you don’t need to be with people who exclude others because they’re different. I wouldn’t have met my boyfriend (yes, I’m still with him!) if it wasn’t for my eyes.

If I didn’t have nystagmus I wouldn’t have something interesting enough in my life to blog about and if it wasn’t for my blog, I wouldn’t have the job I’m currently in. Bottom line is that every cloud has a silver lining.

Hana's daughter

I’m the parent I never thought I’d be

I had always planned on being a laid back parent. My son, born with perfect vision, had been a breeze. And then my daughter entered school. Even though she had albinism and nystagmus, I assumed I’d continue being easy breezy. I would explain the accommodations she needed, the teachers would listen, and we would all go merrily on our way.

While somewhere in the back of my mind I probably knew that this was an unlikely scenario, I still wanted it to be true. No one could tell me for certain what kind of accommodations she’d need because no one knew exactly what her capabilities were. Maybe her vision wouldn’t be that bad. Or maybe it would be terrible. But I was pulling for “not that bad” and if “not that bad” turned out to be the case, then maybe we could squeak by with only minimal accommodations. And maybe I could continue being the laid back parent I wanted to be.

Preschool went well. She sat in front on the rug. Her teachers let her come up and look closely at books being read to the class. See – not that bad, this whole visual impairment thing. And then my daughter’s vision teacher suggested she take a test to see if she could qualify for the gifted program in New York City, where we live. My son was in the program already and loved it. It made sense that my daughter would qualify for the program too. I checked off a box on a form requesting a large print test, and thought, maybe that’s all she needs. Maybe we go through life checking off boxes for large print tests, and everything else just goes according to plan. But when the results came back, it was obvious that large print tests were not going to be enough.

When I called the department of education to say I thought perhaps she hadn’t been able to see the large print test, they dismissed me. Not everyone qualifies for the program, they said. Clearly I was just another pushy mother who felt her child’s genius hadn’t been properly evaluated. It’s possible that if I’d been listened to the first time I might have continued being the laid back parent of my dreams, or maybe this was the inevitable shaking I needed – someone grabbing me by the shoulders and saying: if you don’t stand up and yell for your daughter, no one else will do it.

So I stood up and yelled. And many months and meetings later, the department agreed to give my daughter the test in a digital format where she could control the size and the contrast. Lo and behold: she tested into the program. But it’s hard to be the screaming mother all the time. And by the time my daughter started Kindergarten I thought: I got this. I got the largest department of education in the country to change the way they test visually impaired children, after all. Surely I can navigate Kindergarten.

I met with my daughter’s teachers before school started to walk them through the technology she’d be using. The rules, which were new to me then but I can now recite in my sleep: she sits in the front of the class, she uses an iPad, please remember to charge her CCTV. And then one day my daughter came home and said she hadn’t been able to see her math test. So I emailed her teachers.

“But she didn’t say she couldn’t see the test,” they wrote back. “And also, she got all the questions right.”

I picked up the phone and called the teachers, and said the words that I now know I will be repeating often and for the rest of my life: just because she did well doesn’t mean that with the correct accommodations she can’t do better. I wish the cadence were better, that there was a short poem I could write or a snappy six word phrase that could convey the same information, but if there is I haven’t found it. Nonetheless, this has become my mantra.

Last month my daughter started first grade. At the meeting before school with her teachers I shared the story of the math test and the gifted test. We also discovered together that her reading level had been assessed incorrectly.

“We are navigating this together,” I said to the teachers. “If we’re not partners then it’s not going to work, and I’m going to be calling you up saying she couldn’t see something.”

I don’t know if I came across as an overlycrazed helicopter parent or not, but I don’t care. This is the kind of parent I am now. The next week, when my daughter came home from school with a book at her correct reading level, accompanied by a CCTV and a note from her teachers asking if I might be able to download the book to her iPad, I knew that this is how it will be from here on out. I can luxuriate in being laid back with my son, but when it comes to my daughter, I’m the parent I never thought I’d be. And I’m okay with that.

Sophie Brown

Wobble and me (part 2)

I’d be foolish to pretend that secondary school was a breeze with nystagmus. There were two ways to go about it; suffer in silence, or rise to the challenge. As for me, admittedly I did both.

The first obstacle was getting there, which shouldn’t have been a problem because I lived local. My mum walked with me there countless times, but due to my lousy sense of direction I could never remember the way. Fortunately a few of my friends lived near me so I walked with them. Then there were dips and uneven curbs along the pavement, not to mention the branches that appeared out of thin air to whack me on the head. It took me awhile, but once I had familiarised myself with the way to school, I got used to the path itself.

Bullying is something that every child fears when they take the leap from primary to secondary. Me? I was petrified. I was so scared of being singled out that I did not mention my visual impairment to anyone; I was ashamed of my wobbly eyes. I chose to suffer in silence. Although my mum made the school aware of my nystagmus, I still walked, unchallenged by the teachers, to sit at the back of the classroom with the ‘cool kids’.

That didn’t last long, and I was soon pulled back after class by my English teacher who asked me if everything was okay. Straight away I told him that I couldn’t see the board, but I couldn’t just move to the front because my classmates might pick on me. I got quite upset; English was my favourite subject.

The next day when I came into class, he had devised a seating plan that positioned me in the front row. Virtually everyone moaned, but he blamed it on his inability to learn everyone’s names if they kept on switching seats.

Each year group in my school had at least two hours of Physical Education scheduled per two week cycle. Some people may think that two hours isn’t long at all, but it seemed to drag on forever (especially when we were forced to go outside in the winter wearing shorts and a t-shirt!!!) I HATED it. The sport side wasn’t too bad though. It was when it came to picking teams. Everyone knew how bad I was when it came to running, catching a ball, trying to hit a ball with a bat – anything related to hand eye coordination. It was never a surprise when my name was reluctantly called last of all, even then it was obvious that they’d rather be one person down than have myself on the team. Even when my friends were chosen as team captains, I was still the last one standing. Regardless, each time without fail, I could not help but feel isolated, unwanted, excluded.

Half way through my first year, our English teacher set us an assignment; individually, we had to deliver a presentation in front of the class: something interesting about ourselves. Guess what I did? Nystagmus and how it affects me.

Unfortunately I got marked down on my assignment for pronouncing ‘congenital’ as ‘continental’, but at least the others remembered that. From then on I was called ‘continental nystagmus’, which kind of broke the ice. As my time at secondary school drew on, people became more accepting of my nystagmus, partly because of my presentation – the school even put yellow lines at the end of the stairs because I misjudged a step in year eight, tearing all the ligaments in my ankle (mum said that they should have been there already, but that’s beside the point!!). None of my classmates laughed at me when I screamed and ducked from a netball instead of catching it, they laughed with me.

Yes okay, there was still the odd ignorant guy who would call me four-eyes, or a girl who would snigger to her friends about my wobbly eyes, but what doesn’t kill you makes you stronger. I rose above it. I knew that I was the better person. I walked up to them and showed them the yellow card I got from Nystagmus Network that I kept tucked inside my blazer pocket, explaining in brief about nystagmus (a quick guide for teachers). Mortified that I confronted them, they never bothered me again.

Because of my eyes, I got extra time for my exams, starting from my year nine SATS. All the students who had extra time sat the exams together in a classroom, rather than the main hall with the rest of the year. It was far less stressful, which meant that my eyes wobbled less. Happy days! If I wanted to I was even allowed to have a five minute sleep on the desk!

In fact, I remember finishing my English paper early, so spent the remainder of the time staring at the back of this guy’s hair – my future boyfriend. But that’s another story in itself.

Do you know what? Secondary school days were hard – but with determination and honesty you can get through it! If I can educate a school with 1500 pupils and staff about an eye condition they knew nothing about, then you can too! Don’t be ashamed, be proud that you’re unique!

The Nystagmus Network

Training boost for orthoptists

Future generations of orthoptists graduating from Sheffield University will be even better placed to help nystagmus patients thanks to a new £30,000 eye movement recording laboratory. Only two other universities (Liverpool and Glasgow Caledonian) train orthoptists, so Sheffield’s new facility will have big impact on the profession.

Within five years around 250 orthoptists will have trained in the lab, giving them enhanced skills in the diagnosis and management of nystagmus. This means that nystagmus patients in hospitals across the UK – and beyond – will benefit from the new facility. The lab will also help to diagnose patients with nystagmus in both Sheffield Children’s Hospital and the Royal Hallamshire Hospital.

As well as its role in training new orthoptists, the lab will enable orthoptists in Sheffield University to carry out research. They already plan to develop ways of assessing functional vision in children and adults with nystagmus. Sheffield will also investigate the effect of ageing in patients with nystagmus and whether additional visual stimulation could improve the vision of children with nystagmus.

The Nystagmus Network is contributing £10,000 to the new facility, thanks to a donation from the EBM Charitable Trust. Sheffield University and Health Education Yorkshire & Humber are also contributing £10,000 each. The investment confirms the UK as one of the leading countries in the world for nystagmus research. Nystagmus Network is already funding projects in Cardiff, Leicester, Moorfields (London), Plymouth and Southampton.

Separately, Nystagmus Network has awarded a £1,000 grant to Sheffield to develop a standardised nystagmus information pack for hospitals to give to patients, parents and carers. This project came about after a team of orthoptic lecturers and students took part in NN’s Newcastle Open Day in May.

Moorfields asks big questions

Moorfields Eye Hospital in London is looking for answers to two of the big questions in nystagmus. Firstly, what impact does nystagmus have on the developing vision of young children? And secondly, is there an optimal time for intervening with glasses or surgery?

The Moorfields project will study 30 infants with nystagmus and should be completed during 2017. This project is funded by Fight for Sight, the Giles Warman Foundation and the Nystagmus Network.

Moorfields is also benefitting from a separate £550 grant from the Nystagmus Network towards the purchase of diagnostic equipment for a new paediatric nystagmus clinic