The Nystagmus Network’s newest trustee, Dr Harshal Kubavat has a young child with nystagmus. Like many parents, he had never heard of nystagmus before. After supporting the charity’s work in the research space as a volunteer for some time, Harsh joined us as a trustee in November 2021. He is now a stalwart of the research committee and also serves with the awareness team, overseeing our major events, such as Open Day as well as the research workshops and Symposium2022.
Vivien Jones is the Founder and Honorary President of the Nystagmus Network. She started the charity in 1984 to support parents like her. Her son, Sam had recently been diagnosed with nystagmus. She could find no information about the condition and resolved to change that.
Today Vivien heads a charity providing support and information to parents and adults living with congenital or acquired nystagmus across the UK and around the world.
Vivien is chair of the charity’s research committee and drives investment in new research. Raising awareness also continues to be very close to her heart. She gives talks whenever she can.
This is Vivien’s account of a talk she gave just last week:
I am a friend of Sue Darney, this year’s President of the East Grinstead branch of the Soroptimists. Sue heard me talk about the Nystagmus Network and said she’d like her organisation to support the charity during her year as President. I got a very warm reception when I talked about the origins and development of the Nystagmus Network, about how things began with a consultant telling Ian and me that Sam had nystagmus when he was three months old. I recalled how Ron Mallett of the London Refraction Hospital (now the Institute of Optometry) and I agreed it would be helpful to have a patient group to avoid the kind of information black hole which we as parents had fallen into and how things progressed from there. I told them the story of Sam – including how he progressed from wearing dark glasses with black leather side-pieces to deal with his chronic light sensitivity to getting tinted contact lenses from Guy’s when he was six or seven. Talking about Sam’s journey and the development of the Nystagmus Network always makes me get emotional – and this talk was no exception!
It was wonderful getting the support of the local Soroptimists – they couldn’t have been kinder or more supportive.
Vivien is pictured receiving a cheque for £40 from Sue Darney
Charlie loves football. He also loves his team. When they were short of money to pay for the under 7s new kit, Charlie had the brilliant idea of asking the local bank. Banks have lots of money, don’t they?
Charlie’s letter arrived on Luke’s desk and then Luke also had a brilliant idea. He decided he would raise the £300 the team needed and let Charlie nominate his favourite charity as the team sponsors.
Luke says: “I love football myself and this letter really spoke to me. I wanted to help. So I decided to compete and raise the money to help this cause.”
Choosing a charity was the easy bit! Charlie has nystagmus and his whole family supports the Nystagmus Network. They completed the Welly Walk last June.
Luke completed a triathlon in April, raised £300 and Charlie and his team got their smart new sports tops, complete with the Nystagmus Network logo. Well done, Charlie and Luke!
If you’d like to share your nystagmus story, for Nystagmus Awareness Day 2022, please email us at [email protected]
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.
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.
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.
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
OR you are
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
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]
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.
Are you looking for a new opportunity to put your energy, time, skills and talent to good use? Do you have the passion to support the nystagmus community in all its diversity or lived experience of nystagmus or another form of visual impairment?
If so, please consider becoming a trustee of the Nystagmus Network, a small charity with ambition to grow to meet the changing needs of the nystagmus community.
We are keen to hear from you if you have any of the following:
Trustees are responsible for the strategic direction of the charity and oversee its operations. They also have legal responsibilities under charity law but no personal liability.
The full committee meets on a Saturday four times a year, alternately in person in central London and virtually via Zoom. In addition, trustees are expected to join at least one sub-committee (research, awareness, support and finance). These meet via Zoom either in the evening or daytime every 4-6 weeks. Occasionally, it is necessary for trustees to join a temporary working party to oversee an event, a project or staff recruitment.
The only other time commitments are attendance at the annual Open Day and support for Nystagmus Awareness Day.
Please contact us at [email protected] with a summary of the skills and experience you would like to offer. We will be in touch. If you would like to find out more before making a commitment, please contact us at the same email address to request an informal chat with Tim, our chair.
We welcome interest from people with and without nystagmus.
All appointments are subject to a DBS check.
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.
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
