Category: Living with nystagmus

A group of researchers.

Perceptions of nystagmus and the impact of the Covid-19 pandemic

Impact of the COVID-19 pandemic on individuals with nystagmus
and an exploration of public assumptions about the condition: an electronic questionnaire study

The study explored the self-reported impact of the COVID-19 pandemic on those with nystagmus, and examined both public understanding of how nystagmus affects people who have it and the perceptions of public understanding by those with the condition and their carers.

In conclusion, the study highlights the lack of public awareness of nystagmus and suggests opportunities to increase awareness without the need for extensive knowledge of the condition. The COVID-19 pandemic has posed additional difficulties for those living with nystagmus, which is likely to be comparable among those with similar ocular disorders.

Jay Self, a member of the team behind the survey, says: “Perhaps the most important message is that people who even loosely know someone with nystagmus or even those who have heard of it, tend to have a much greater understanding of the problems faced by those with nystagmus meaning that perhaps very soft things (like Richard Osman talking about it on the radio, for example) could be done to improve public awareness and appreciation without the need for the whole populous to have been to a seminar on it.”

Sue Ricketts from the Nystagmus Network, also involved in the survey, says: “It just goes to show that raising awareness of nystagmus, such as by marking Nystagmus Awareness Day each year, really does have an impact on the lives of people living with this condition.”

Read the full research article online here

Thank you to those members of the nystagmus community who took part in the survey and shared it with their wider circles.

The logo of BIOJ.

Nystagmus in Down Syndrome – a Retrospective Notes Review

Nystagmus has been reported in up to 30% of people with Down Syndrome (DS), and yet is still not well understood. This study, by a team at Moorfields Eye Hospital, aims to characterise the clinical features of patients with DS and nystagmus. It is recently published in the British and Irish Orthoptic Journal (BIOJ).

The article sheds light on the different types of nystagmus which can be present in someone who has DS and, in particular, that these can arise from a variety of causes, not always linked directly with DS.

Full clinical assessment of the nystagmus is needed in order to inform support and management of the sight.

Read the full article in BIOJ online here

Hands raised in the air in silhouette against a blue sky.

Volunteer for us!

The Nystagmus Network is a little charity with very big ideas. Do you want to be part of our exciting journey?

If you have the skills and time to give for just a couple of hours a month to support the work of the Nystagmus Network, we’d love to hear from you. Whether you’d like to provide IT support, flex your digital skills, help with fundraising, manage our online shop and post out orders or organise some local get togethers, please get in touch. Thank you.

Email us at [email protected]

The hands of someone working at a desk.

Nystagmus awareness at work

A guest post

After my first proper job following university, I decided to ‘come out’ about my disability and support needs. I was worried this might make me stand out for the wrong reasons, but felt it was important to be my own advocate.

It was a positive move and I get lots of support and adaptations at work in my new job.

But, with remote working, I felt I was ‘back in the closet’.

Homeworking has been a revelation. It suits me so much better. There’s no commuting and the stress of getting my train, more screen breaks and no setting up the desk each day. I’m all set up at home with lots of natural light and my big screens. No hot desking!

The downside is that people are no longer seeing me every day, passing my workstation. On Zoom they don’t notice my eye movements, my head turn, they can’t see the large print papers on my desk or my wide screens. People have forgotten I have nystagmus.

I’ve found it something of a demeaning experience to have to go through it all again with my manager and my teammates, but the positive outcome for me is that home working is considered a reasonable adjustment and is now written in to my contract.

My message is ‘don’t let people forget about us’. We’re not working for their convenience. Things can still fall through the cracks. I want to work in an environment that lets me shine.

Do you have a nystagmus at work story you’d like to share for Nystagmus Awareness Day 2022? If so, please email us at [email protected]

Download our guide to Nystagmus and Employment here

A thank you card from the Nystagmus Network showing an image of 2 boys taking part in a team building exercise.

It’s so nice to be appreciated

In 2021 the Nystagmus Network supported 591 people to come to terms with nystagmus, to find the support and information they needed. We’re even busier in 2022, as more and more people find their way to us and join the virtual nystagmus community. It’s so rewarding when the people we support show us their appreciation.

Here are just some of the lovely things that people are saying about us:

About our Parent Power workshops: “Thank you for setting up today’s workshop. It was really helpful.” … “Thank you – it was wonderfully informative and extremely helpful. Can highly recommend.” … “Thank you so much – it was incredibly insightful and thoroughly worth the time.”

About our monthly forums: “I’ll look forward to the forum next time. It’s nice to keep in touch. It’s part of what makes the Network special.” … “It has been wonderful to hear/speak/learn from all of you and your experiences, to speak to parents with similar challenges. I look forward to attending future parent meetings. Thank you for setting this up!”

About our Information and Support Line: “Huge shout out to the Nystagmus Network for the most informative chat about congenital and acquired nystagmus. Your guidance has been invaluable.” … “Thank you so much for your invaluable advice. Please keep doing what you do.”

About our information documents: “We’re quite early on in learning about our son’s nystagmus and how it affects him and the Nystagmus Network has been so helpful so far. The resources available have explained so much.” … “ I am a big fan of your resources and have found them really helpful.” … “I’ve just read the PDF ‘Nystagmus and benefits’ and found it really interesting, thanks for summarising a lot of info in an ‘easy to understand’ way.” … “. I just wanted to let the charity know that I’ve found the PDF documents really useful so thank you.”

About our Facebook page: “Thank you for all your advice over the last few years, even though it’s taken me nearly 40 years to realise my condition. If only I had known back there I would have been in my teens and the help would have been great. You do a great job getting it out there.” … “I just made my first donation for research! I have AN and Oscillopsia. Fortunately, 12 weeks of neuro rehab with specific eye coordination exercises has helped me be able to walk and jog on the beach near my home. Each mile accomplished is taken with gratitude for the work and support that Nystagmus Network brings. Thank you for all you do!” … “Thank you for the excellent work carried out by the Nystagmus Network. Through it, I’ve learned more about how to live well with my condition in the last few years than I ever thought possible!”

On our Acquired Nystagmus away weekend: “We had a lovely time last weekend and I cannot thank you enough for all the work you put in to make this event so successful.” … “It was so lovely to meet you all in Bath and, whilst tiring for us sufferers, was a great opportunity to chat on a more personal level. We had a great connection and got on so well. I felt like we could see (and appreciate) our individual characters, despite the very troublesome nystagmus. Thank you so much for arranging this.”

Hanni negotiating a rock with two walking poles on Scafell Pike.

Hanni’s nystagmus story

Whilst the trustees oversee strategy and guide the direction of the charity, overall management and day-to-day operations are in the capable hands of our small dedicated staff team. Hanni is the newest member of the Nystagmus Network staff team. This is her nystagmus story, in her own words:

When I was diagnosed with nystagmus in October 1987, my parents were told 3 things: I wouldn’t drive, I wouldn’t go to mainstream school and I wouldn’t ride a bike. Devasting news for first time parents. But wow, have I proved those doctors wrong!

Not only did I go to mainstream school, I achieved 10 GCSEs, 4 A Levels and a 2:1 BA (Hons) in Primary Education. I secured my first job in a Montessori nursery (yes, there were lots of turned down job applications along the way, but determination got me through) and I then went on to complete a Diploma in Montessori Early Childhood and Pedagogy. My greatest achievement during this time was leading an Outstanding Ofsted inspection as Manager of a 40-place nursery. I then became a Managing Director of a small collection of nurseries, alongside 2 colleagues. I now work for the Nystagmus Network.

As a teenager I did a local paper round, on my bike. Going a familiar route and/or following my dad who would call out instructions or hazards made this possible.

I love to travel and have done so through university (teaching in India for 2 weeks), and more recently with my husband to Vietnam, Italy and Croatia. I find bright sunshine a real challenge and so I’m heavily reliant on my husband guiding me, particularly when it comes to negotiating steps and busy places.

Since having my son in 2018 (who has incredible sight), it has instilled in me how important it is to normalise disability. At three 3 and a half he is already learning how to help me: pointing out steps, describing where something is and telling me what he can see.

I take up offers of help and support, eg cane training, PIP, use of a Blue Badge and discounted theatre tickets. These make everyday life more accessible for me. 

Nystagmus is part of me and makes me who I am today. I challenge myself to do things that I know will be difficult: I travelled to Shanghai on my own to visit a friend and in 2011 I climbed Scafell Pike, with my now husband. This was an immense challenge: the uneven ground and countless steps made it particularly difficult for me.

I want to show people that having a disability doesn’t have to limit you. Yes, I have had to work harder than others but I’m proud of what I’ve achieved.

Tim holding an award

Tim Hands – living with nystagmus

Tim has a whole clutch of awards for his work.

He says: I ain’t done bad for a lad that can’t see too well.

This is Tim’s amazing nystagmus story or watch his video

I was born with Congenital Nystagmus. I’d probably describe my sight as middle of the range, but still not good enough to drive.

After leaving school I took a degree in Fine Art in Nottingham and then moved on to the Royal College of Art where I took a Master’s degree in film.

Somehow, despite my lack of visual acuity, I have managed to forge a career in post-production sound for film and television. 

Much of my work is re-recording dialogue with cast members and my hearing has been my asset. I may not be able to see dialogue in sync as well as my colleagues, but my hearing is what I rely on.

People I have worked with aren’t really aware of the full extent of my condition. I hide it well and none of the actors I have worked with have even noticed.

My work has taken me to the US and Europe and I have had a pretty successful time working on films such as “Chicken Run”, “Mamma Mia” and “Les Misérables”, as well as major TV series including “Brave New World”, “The Nevers” and every episode of “Game of Thrones”. You can hear my voice in many of these shows, too.

I have been nominated for numerous awards along the way and have won seven MPSE (Motion Picture Sound Editors Guild) Golden Reels and four Primetime EMMYs. I ain’t done bad for a lad that can’t see too well.

Watch Tim’s video online here

a blurred image of busy outdoor scene with lots of people milling around

Living with nystagmus through a global pandemic

Learning to live with nystagmus, finding our way in the world and developing independence creates a range of challenges as we move through the stages of life. Whether we’re talking about an everyday experience or the bigger and more stressful events we face, we all need a certain amount of resilience.

There’s a balance to strike between knowing when to seek or accept support and when to resist. Having someone help you may be the easy way, but we also need to hold on to our independence, develop self-confidence and learn new skills.

The dictionary describes resilience as “the capacity to recover quickly from difficulties; toughness”. Ultimately, it’s something that’s developed through the challenges we face in our lives, often learnt from the things that might not go as well as we’d hoped. Misjudging a step, being misunderstood because we’re not looking someone in the eye, struggling to see a train departure board or a menu, all these build our resilience and that’s not diminished when we choose to ask for help.

The challenges of this last year have added an additional level to our need for resilience. Familiar routines and networks have been removed with the loss of many of the vital distractions, the random meetings, the events to look forward to. In addition, we’ve been bombarded with often unhelpful news tugging emotional strings, loosening attachment to normal life and adding levels of fear and uncertainty.

So, what can we do to retain or renew our resilience?

I’ve tried to keep perspective and challenge fear inducing messages.


Daily walks have been important for physical and mental health and have also meant that I’ve guarded against having to relearn basic mobility skills or redevelop the confidence to get out independently again when things return to normal.


I also think having hope is important, having plans for when this is all over, buying tickets for shows, planning a family get together or meeting with friends.

Personally, I find sport great for building resilience, keeping running when you really want to stop, not being disheartened by the disappointment of a defeat or an unlucky net chord in tennis or a bad decision from an official. 

Sometimes we face bigger challenges: ill health, loss of loved ones, struggles to make ends meet or to find employment. It can feel that nothing has fully prepared us for these and yet learnt resilience can still help. Perhaps a capacity to accept our vulnerability can help the development of resilience, freeing us to accept support where we need it.    

Child wearing a Nystagmus Network T shirt and holding a mascot.

What shapes quality of life of visually impaired children and young people?

Guest post by Ana Semrov, UCL GOS Institute of Child Health

We are looking for volunteers to take part in our study called: What shapes quality of life of visually impaired children and young people.

What is the study about?

We aim to find out what helps children and young people with visual impairment and their families adjust to living with impaired eyesight and helps them have a good quality of life. We hope this will help us to develop and improve care and support for families of children and young people with visual impairment. To do this, we are inviting children and young people with visual impairment and their families to take part in our study.

What would I need to do?

Taking part in this study would involve both the child/young person with visual impairment and at least one of their parents/carers completing some questionnaires about topics like general health, well-being, and relationships with others.

Who are we looking for?

We would like to hear from you if you are

  • Someone living in England or Wales
  • 8 to 18 years old
  • Have visual impairment caused by any medical condition

OR you are

  • Parent or caregiver of a child aged 8 to 18 years who has visual impairment

I’m interested! What should I do now?

First, we kindly ask you to fill in a few questions that will tells us a bit about you to help us make sure this study is right for you. To answer these questions, please scan the QR code below or go to https://redcap.idhs.ucl.ac.uk/surveys/?s=9FNN88TLENTKY4YE

QR code

If you have problems accessing the weblink provided above, or if this sounds like something of interest of you but would like to hear more first, please let us know by calling: 020 7905 2241, or email: [email protected].

Thank you for considering taking part in our study.

Yours sincerely,

Ana Semrov (Study Researcher), Life Course Epidemiology and Biostatistics,
UCL GOS Institute of Child Health, 30 Guilford Street, London, WC1N 1EH;

020 7905 2241          : [email protected]

Professor Jugnoo Rahi (Professor of Ophthalmic Epidemiology), Life Course Epidemiology and Biostatistics, UCL GOS Institute of Child Health, 30 Guilford Street, London WC1N 1EH;

020 7905 2250                     : [email protected]

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