nystagmus – Page 9 – Nystagmus Network

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

Trustee vacancies

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:

digital skills and organisational IT experience
professional experience in mental health support
first-hand knowledge of education and SEND
fundraising skills and experience
qualifications in benefits support
experience in clinical practice
a working knowledge of research
experience in corporate or employment law

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.

People’s perceptions of nystagmus and the impact of Covid-19

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.

Read the full summary of the survey results online here

Joel’s nystagmus story

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

To share your nystagmus story, please contact us

Two knitted nystagmus mascots wearing silver grey and purple clothes to mark the Platinum Jubilee, stand in a garden.

Join us for the big lunch

As part of the long weekend 2-5 June, to celebrate the Platinum Jubilee of Her Majesty the Queen, the Nystagmus Network is inviting members of the nystagmus community to join us for our very own virtual big lunch.

Let’s all get together!

Whether you’re lunching at home in the garden, in your street or a local park, whether it’s a barbecue, a sharing platter or cucumber sandwiches and Jemma’s lovely Platinum Pudding, please share your photos with us and join the rest of the nystagmus community for lunch.

We’ll share your photos on our Facebook page to show that we all belong to the nystagmus community.

Find out more about the Platinum Jubilee here

Mascots available to order here

Gemma wearing the CROM and a clinical face mask.

Nystagmus Network funds research equipment

At the end of 2021 the Nystagmus Network invited funding applications from UK nystagmus researchers to cover the cost of equipment needed to take their work forward. This week work has begun at the University of Sheffield and Sheffield Hospital using newly funded equipment.

Orthoptist, Gemma Arblaster, from the University of Sheffield applied for a grant to purchase two different head position measuring devices. Her aim was to find a simple, accurate and clinically acceptable method of measuring head position and abnormal head postures in patients with nystagmus.

The Nystagmus Network was delighted to be able to fund the equipment, costing £549.25, thanks to the generosity of our supporters and fundraisers.

In patients with nystagmus head position is an important measurement, particularly during different tasks and different levels of visual demand. Currently in clinical practice Orthoptist or Ophthalmologist descriptions of head position and abnormal head postures are relied on. This method could be improved, and head position could be recorded and measured more accurately.

The team at the University of Sheffield have been exploring methods of head position measurement, with an attempt to find a robust, but simple method of accurately measuring head position and head postures. Ideally this measurement would be simple to perform and non-invasive, but finding an accurate and remote method of measuring head position, suitable for clinical practice, has proved difficult. The gold standard Polhemus device was accurate, but impractical to use in a clinical setting. The depth camera (microsoft Kinect camera) was easier to use, but the data was less accurate than the Polhemus, particularly when less of the face was visible to the camera. The Kinect camera has also been commercially discontinued.

Gemma’s application was for two ‘low tech’ devices to measure head position to further both clinical and research interests in measuring head position and abnormal head postures in nystagmus. The cervical range of motion (CROM) is positioned on the head, but is considered accurate and fairly simple to use. The goniometer is an even simpler device that is placed near the head and does not need to be worn, however it can only measure in one plane at a time. Both devices offer potential to be used accurately to measure head position and abnormal head postures in patients with nystagmus, but further evidence is needed to explore their usability and support their accuracy.

Firstly, the devices will be used in the Orthoptic clinic at STH NHS FT to explore their ease of use and limitations in patients with nystagmus and abnormal head postures. Secondly, ethical approval will be gained for a research study comparing clinician descriptions of head position and abnormal head postures (current clinical practice) with measurements using the CROM and the goniometer in patients with nystagmus and abnormal head postures for other clinical reasons. The aim is to find out which method of measuring head position and abnormal head postures is the most simple and accurate in patients with nystagmus. This research will be published and the results disseminated. The plan is to apply for further funding to support research investigating and measuring head position and abnormal head posture measurement in nystagmus. This is particularly important for measuring the outcomes of interventions for nystagmus that are specifically targeted at improving head posture (such as surgery) and improving vision (such as medications).

Gemma currently has a clinical contract with STH NHS FT and a lecturer position at the University of Sheffield. This gives her a unique opportunity to undertake research in clinical populations and in student populations. The CROM and goniometer devices will be kept in the Orthoptic Department at STH NHS FT and used in patients with nystagmus for clinical and research purposes. Both devices will also be available to the University of Sheffield for undergraduate teaching and undergraduate research projects, which can only recruit participants from the volunteer student population.

This week, Gemma has begun work with the Nystagmus Network funded devices. She said:

“Thank you Nystagmus Network for funding our new head posture measuring equipment. I’m excited to start using it in the orthoptics clinic at Sheffield Hospital.”

A doctor wearing scrubs is writing on a clipboard. She is smiling at the camera.

Nystagmus affects quality of life of children and their parents, confirms new research

A team at the Eye Hospital and School of Ophthalmology and Optometry at Wenzhou Medical University in China have recently published their research on the effects of childhood cataract surgery in young children. The results show that the impact of nystagmus, strabismus and amblyopia, resulting from the cataracts, not from the surgery, have a significant impact on the quality of life of both the child and their parents, when compared to families where the child has full vision. This will come as no surprise to families living with a child who has nystagmus.

The quality of life is affected most for the child because of the impact of these eye conditions on the functional vision, meaning that they are more likely to be limited in the activities they can take part in at school and elsewhere. For parents, the most significant impact on the quality of their life is the constant worry about their child’s eyesight.

It is thought that the best solution would be to bring cataract surgery forward in these children, before the nystagmus, strabismus or amblyopia has time to develop.

Read the full article online here

A group of people wearing white coats sit in rows behind laptops with a lecturer pointing at a screen.

Eye health experts seek to refresh eye research priorities

Eye experts across the UK are calling for your input into a new survey designed to refresh the James Lind Alliance Sight Loss and Vision research priorities that were first published in 2013.

Despite on-going eye research taking place across the world, there are still many questions about the prevention, diagnosis and treatment of sight loss and eye conditions that remain unanswered. Funding for research is limited, so it is important for research funders to understand the unanswered questions of greatest importance to patients, relatives, carers and eye health professionals so that future research can be targeted accordingly.

Following a review of the existing eye research priorities by the NIHR Ophthalmology Specialty group and the UK Clinical Eye Research Strategy earlier this year, a survey has been developed to help fine tune which of the 98 potential research questions should be taken forward as part of the refresh.

Professor Rupert Bourne, NIHR National Specialty Lead for Ophthalmology said:

“It’s almost 10 years since the UK last published its eye research priorities and progress has been made in learning more about each of those 12 key areas that were set at the time. This survey is designed to help us assess whether these are still the right priorities for us to be focusing our attention on, and to delve deeper into some of those, or whether there are new areas of eye research that we now need to make a priority.

We are encouraging all those with an interest in eye health and research to take part in the survey to help shape the direction of future eye research.”

The survey is open to all eye healthcare professionals and researchers as well as patients, carers and members of the public to participate in. The survey feedback will inform the final Top 10 updated priorities across different eye subspecialties.

Please click here to take part in the survey.

The survey will close on 9 August 2022.

Take part in the survey here

Two people at a table. We can see only their hands. On the table is a handheld device a cup of coffee and a glass of water.

BlindAmbition takes over the Working Age Forum

BlindAmbition is pleased to announce that it will be taking over the running of the Working Age Forum (WAF) for Visually Impaired People endorsed by the RNIB. The forum is a relaxed, sociable space for visually impaired people to meet, learn and inspire each other to achieve their best lives. The forum has been run for many years by London Vision but recent strategic changes have required a new home. Blind Ambition is extremely grateful to London Vision for its dedication in running this valuable support network and is honoured by the opportunity to continue this work and broaden it to cover the entire UK.

BlindAmbition has been working with the RNIB, Shaw Trust and other leading disability empowerment organisations over the last two years to help blind and partially sighted people get into work with a series of employment webinars aimed at every aspect of the employment journey, from CV writing, to interview techniques and harnessing government support available. Alongside this they offer one2one coaching to help people with their employment journey. Each month there will also be a 5 minute slot in which they put the limelight on a “VIP of the month” to share their story and success as well as tips on technologies and other topics of interest for the forum. The WAF builds on this existing partnership to further help support blind and partially sighted people. It will continue every second Wednesday each month from 6-7pm on zoom while they consult with members on how best to develop the concept. They will be looking to develop the WAF further to enhance skills with rebuilding, revitalising, reskilling, redirecting and recruitment in the employment journey.

Seema Flower the MD of BlindAmbition who is also registered blind said:

“At BlindAmbition we’re extremely excited to be helping blind and partially sighted people to find work and the rewards that come from it. We mustn’t forget that we’re helping people. Everyone has dreams and ambitions which is why it’s so exciting when participants share their success stories and you see how much impact a little care and support can have in people’s lives.”

BlindAmbition helping blind and partially sighted people achieve their dreams.

To join the first session of the series, please register using this link.

Care givers survey

Participants needed for research into the effects of the pandemic on those caring for and supporting people living with a visual impairment

The Division of Optometry and Visual Sciences, School of Health Sciences, City, University of London are looking for volunteers, aged 18 or over, who provide care and support to an individual living with a visual impairment in the UK to take part in a study investigating the effects of the pandemic on those with a visual impairment, their caregivers and those providing low vision services to them; and how lessons learnt can inform future low vision services and support.

As a study participant, you are invited to complete a questionnaire about your experiences and views about how the pandemic affected you as a caregiver for an individual living with a visual impairment. The questionnaire is written, and the responses are required, in English. The questionnaire in available on line here.

If you prefer, Word document attachments of the questionnaire can be e-mailed to you or a paper version is available.

Questionnaires would be expected to take 10 – 15 minutes to complete.

In appreciation of your participation, you would have the opportunity to be entered into a prize draw for a £50.00 Love2Shop Gift Card.

For more information about this study, or to volunteer to take part,
please contact: Liz Frost at [email protected]

This study has been reviewed by, and received ethics clearance, through the Optometry Proportionate Review Committee, in the School of Health Sciences, City, University of London (ETH2022-0840).