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.

Children pointing at a computer screen.

Thank you for donating to our BBC Radio 4 appeal

Thank you to everyone who gave to our BBC Radio 4 charity appeal in June this year. The appeal raised £9, 230.

You can read what a difference the appeal has made to the charity and the nystagmus community on the BBC website here where you can also listen again to Richard Osman presenting the appeal on behalf of the charity.

Thank you, Richard

Read our appeal story here

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

BBC charity appeal raises £8,000

Following transmission of the Nystagmus Network’s Radio 4 appeal, presented by Richard Osman, the charity has received universally positive feedback on the clarity of the broadcast’s message. One listener, in his 70s, said he had learned more about nystagmus in those 3 minutes than throughout the rest of his life. We have been contacted by several individuals saying that they were totally unaware of the condition previously or that Richard himself lived with nystagmus. We have also enjoyed unprecedented social media engagement. With transmission following closely after Nystagmus Awareness Day on 20 June, the appeal raised awareness of the condition to new heights.

In 2020, when most fundraising has ceased and people with nystagmus have been struggling with homeschooling, social distancing, shopping, lack of hospital appointments and isolation, the appeal has been a lifeline to the charity and the nystagmus community in terms of generating donations.

The total raised has reached almost £8,000 to help the charity extend and develop its support and information services. This means that, as eye clinics and high street opticians begin to reopen, patients and their families will have access to information about nystagmus. Clinic staff will be aware of their needs, thanks to training the charity is now able to provide. In September, when children return to school, parents and school staff will enjoy the benefit of accurate, up to date information about education support to ensure that all young people with nystagmus attain their academic potential.

We are indebted to our wonderful presenter, Richard, for kindly agreeing to voice our appeal and share his own reflections on living with nystagmus. We often tell young children that, with the right support, they can achieve anything, despite their disability. They can even become a famous TV presenter if they work very, very hard. Thank you, Richard, for the inspiration and thank you to everyone who responded to the appeal.

The Nystagmus Network appeal page on the BBC Radio 4 website, showig a picture of Richard Osman and details of the appeal.

Missed the appeal? Listen again!

If you missed Richard Osman presenting the Nystagmus Network charity appeal on BBC Radio 4 at 07.54 this morning you can listen again now.

Listen again here

Make a donation to the appeal here

Huge thanks to Richard and to everyone for donating to the appeal. Your generosity will ensure that the charity can continue to support the nystagmus community.

Richard Osman

Richard Osman to voice Radio 4 appeal

The Nystagmus Network is delighted to announce that it has been granted a BBC Radio 4 charity appeal.

The appeal will be presented by well known TV presenter, broadcaster and author, Richard Osman on Sunday 5 July.

Richard has nystagmus himself and says it is his “absolute pleasure” to be able to support the charity in this way. Although he enjoys a successful career, he explains that at school “I had to listen an awful lot”. He famously cannot use an auto-cue when presenting on TV and must commit everything to memory.

Hear Richard talk about the Nystagmus Network here

The charity is particularly thrilled to have Richard’s support with the appeal as he is something of a role model to children and young people who have nystagmus. They see him on TV and know that they too can achieve their ambitions if they work hard and get the support they need.

Richard’s success and high profile are also a source of great comfort to the many parents who worry what the future may hold for their visually impaired children.

The charity’s Information and Development Manager, Sue Ricketts says: “We are so pleased to have been awarded this opportunity to have a Radio 4 appeal. Many listeners will hear about nystagmus for the very first time from someone who lives with the condition himself. What better way to raise awareness?”

Every pound donated to the appeal will help the Nystagmus Network continue to support the children, adults and families living with nystagmus and provide them with the information they need to thrive.

The appeal will be broadcast on Sunday 5 July at 07.54 and at 21.25 and again on Thursday 9 July at 15.27 on BBC Radio 4

  • DAB BBC Radio 4
  • FM 92 – 95 FM, 103-105 FM
  • LW 198 Long Wave.

Picture of Richard Osman courtesy of Penguin Books

Please click here to donate to the appeal – thank you

The Nystagmus Network logo and the words nystagmus research

Your nystagmus research questions answered – question 9

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 9: How can we best improve the quality of life for those with nystagmus?

(HL) Empowering patients and their families, making sure they have the information they need to understand their condition and that needs to be passed on to their schools or their employers on how best to optimise their circumstances. These are all little things that don’t require a pill or a prescription, but make a big difference. If, say, a child is put into the right place in front of the whiteboard for their null point or given extra time or things are blown up or they’re given an i-Pad. All these little things make a big difference before we prescribe anything or do anything else.

Then there are little things like optimising your glasses, making sure they’re the best they can be, with tints if you need them or checking your vision in the dark if you have a retinal dystrophy, or checking whether bright light makes a difference. It’s actually about understanding all those little things. Then you can get on to other things like contact lenses, surgery for null point if necessary, trying treatments such as the ones we try for acquired nystagmus and for congenital nystagmus. Sometimes there’s prism treatment. There’s quite a lot of stuff that can be done in your local clinic that doesn’t require anything very special, but just requires understanding of the condition.

(JS) I would agree. A lot of it boils down to information sharing support and also doing all the normal stuff in a timely way. I totally agree with the glasses correction. It’s easy to put that to one side when people are stressed about getting the genes tested. You’ve got to do all the normal things we do in a timely way and in a bespoke, sensible way.

A final thing is a massive thing that the Nystagmus Network can do, which they have been doing for the last few years, which is really celebrating good news stories, which I don’t think was a massive focus a few years ago. If you speak to David Katz or Richard Osman they almost say that ‘nystagmus made me,’ ‘it’s made me do the things I’m doing and it’s actually given me super powers.’ You cannot push that message too much, especially when you’ve got new mums with little babies and they think it’s the end of the world.

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.

Nystagmus, the way we see it

If you’ve ever wondered how a person with nystagmus sees or how the condition affects their sight, listen to Richard, Harriet and Will explain in our video.

You can show our video to anyone or use it, completely free of charge, for training purposes. All we ask is that you let us know.

Nystagmus, the way we see it – watch here.