An eye care practitioner is testing a patient's eyes using a RETeval device.

Take part in research for shorter waiting lists

Jay Self is Associate Professor at the University of Southampton and a long-term supporter of the Nystagmus Network. He is a nystagmus researcher and eye doctor and is asking us for help with a new research project. Please take part if you can.

Often people with nystagmus (and other eye conditions) have to wait weeks, months or even years to get a diagnosis and much of this is due to NHS waiting lists for specialist tests.

Jay and his team have studied the use of a hand-held device (RETeval®) which can help diagnose many eye conditions and, importantly, can be used in any eye department, anywhere in the country meaning shorter waiting times.

The work so far has found that the device, used as a screening tool, could mean that patients no longer have to wait so long for some very specialist tests called Electroretinograms (ERGs) and Visual Evoked Potentials (VEPs).

They now want to run a large study and need help from people who have been through eye services to advise from a patient’s eye view.

Involvement would mean taking part in a TEAMS or ZOOM meeting a couple of times a year to offer your opinions. Attendance is voluntary, of course.

If you would like to help, please email Mr Self and his team at [email protected] and they will be in touch when the meetings are planned.

Thank you for your help.

This research is supported by Gift of Sight and by the Nystagmus Network who purchased the RETeval® device.

Jay Self and Mike Larcombe at University Hospital Southampton. Mike wears a Nystagmus Network T-shirt and his Te Araroa medal.

Nystagmus Network invests £17,000 in research

Nystagmus Network trustees donated £17,000 to the paediatric fund of the University of Southampton’s Gift of Sight appeal last December thanks to the generosity of our fundraisers and supporters.

Someone who contributed more than most is Southampton-born Mike Larcombe who, in 2020 completed his Walk for Wiggly Eyes, a three and a half month long adventure following the Te Araroa pathway and then, in 2021, cycled all around Tasmania for his Wiggly Walk 2.

In total to date Mike has raised a phenomenal £6,500 for nystagmus research.

THANK YOU, MIKE!

The £17,000 is being used to fund a hand-held RETeval device, an imaging tool which will help diagnose changes that may impact a patient’s vision, and four Cervical Range-of-Motion instruments (CROM) to measure head postures.

The new equipment will be used in both the clinics and the research labs at University Hospital Southampton.

Consultant Ophthalmologist, Jay Self said: “This funding will have immediate impact on children with nystagmus in addition to providing a small equipment contribution to allow our larger clinical trial to be funded and approved by NIHR.”

Mike Larcombe with Jay, Helena, Harsh and Sue at University Hospital Southampton.

Meet me in Southampton

This August the Nystagmus Network was finally able to meet with and celebrate the incredible achievements of a true nystagmus superhero, Mike Larcombe.

From December 2019 and for a total of three and a half months, Mike walked the entire length of New Zealand (yes! the North and the South Island!) following the Te Araroa pathway to raise funds for nystagmus research and awareness of the condition.

Along the way he endured very wet feet, a constantly rumbling tummy and often only the company of chickens!

As if that were not enough, in 2021 he was at it again, cycling (and singing!) all the way around Tasmania.

In total Mike has raised a whopping £6,500 for nystagmus research!

His feet were nice and dry this week as he chatted with Jay Self and Helena Lee, researchers and clinicians at University Hospital in Mike’s home town of Southampton along with Harshal Kubavat and Sue Ricketts from the Nystagmus Network. During their visit the group toured the clinics and research labs to find out where some of that hard earned fundraising money goes.

The eye logo of the Nystagmus Network and the words Nystagmus Awareness Day 20 June

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

Jay Self

Does albinism protect against AMD?

We are seeking potential research candidates on behalf of researchers in Southampton (Jay Self and Helena Lee) who must be over the age of 60 and have any form of albinism (OA, or OCA). Thank you to those who have already responded. We have already found 12 people, but we really need 20 for a viable study. If you or anyone you know fits the bill, please read on …

Jay and Helena are seeking to understand two questions which have baffled researchers for some time and they need your help:

1.       Why has Albinism and Age Related Macular Degeneration (AMD) never been seen in the same patient when AMD affects 1/3 of people over 75? Are people with Albinism protected from this condition?

2.       Why does the retina lose function late in older animals with Albinism, but apparently not in humans?

If anyone with Albinism, who is over the age of 60, would like to help Jay and Helena find answers to these important questions, please complete the form below. Please note that by completing the form you are giving us your permission to pass on your details on to the relevant research team.

Thank you.

A postcard with pictures of people walking and the words Nystagmus Network walk 500 miles for nystagmus research.

Could you help us walk 500 miles?

If 50 people each walked 10 miles and raised £100 in sponsorship, that would be £5,000 for nystagmus research.

Why 500 miles?

That’s roughly the distance you’d cover if you walked from one UK nystagmus research centre to all the others. Let’s see if we can do it!

Starting at University Hospital, Plymouth, calling at The University of SouthamptonCardiff UniversityMoorfields, LondonThe University of Leicester, you’d eventually arrive at the University of Sheffield some 565 miles later. But you can walk just 10 miles.

What would £5,000 buy?

Here’s a list of just some of the things Nystagmus Network trustees could invest £5,000 in:

  • diagnostic equipment for use in a research or clinical setting
  • an academic post to focus on an aspect of nystagmus
  • a brand new in person nystagmus research trial

How to set up your 10 mile walk

  1. Decide on your route – you can build up your 10 miles with lots of shorter walks over several days
  2. Set up your Justgiving page for your sponsors here; we’ll help you promote it
  3. Download a sponsor form here for your offline donations
  4. Tell all your friends and family about your walk
  5. Tell the Nystagmus Network!
A graphic of Mike dressed as the wiggly eyed warrior.

Our £17,000 investment in research

Nystagmus Network trustees have donated £17,000 to the paediatric fund of the University of Southampton’s Gift of Sight appeal.

The money will be used to purchase a hand-held RETeval device, an imaging tool which will help diagnose changes that may impact a patient’s vision, and 4x Cervical Range-of-Motion instruments (CROM) to measure head postures.

Patients with Nystagmus typically move their heads to access the best angle for their sight
and measuring this activity will provide further data to study this condition.

The new equipment will be used in both clinical and research settings and enable the Southampton team to access further research funding.

Consultant Ophthalmologist, Jay Self said: “This funding will have immediate impact on children with nystagmus in addition to providing a small equipment contribution to allow our larger clinical trial to be funded and approved by NIHR.”

Trustees were able to make this investment thanks to the generosity of the Nystagmus Network’s supporters and fundraisers, notably Southampton-born Mike Larcombe who, in 2021, completed his Wiggly Walk 2, a cycle ride around Tasmania, and raised a further £1,000 in sponsorship. Thank you, Mike.

A screenshot of the Nystagmus Network UK research workshop on zoom, showing thumbnail images of 20 delegates.

Nystagmus Network hosts UK research workshop

On Friday 2 October, the Nystagmus Network once again hosted the annual UK nystagmus research workshop.

This is an opportunity for researchers, clinicians and academics to get together to share their work and plan greater collaboration. They are, after all, all working towards the same goal. The workshop took place via zoom.

Nystagmus Network trustees and staff were delighted to be joined by nystagmus experts from

  • The School of Optometry and Vision Sciences, Cardiff University
  • The Ulverscroft Eye Unit, University of Leicester
  • Moorfields Eye Hospital, London
  • Royal Eye Infirmary, Plymouth
  • Academic Unit of Ophthalmology and Orthoptics, University of Sheffield
  • University of Southampton and Southampton General Hospital

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.

The Nystagmus Network logo and the words nystagmus research

Your nystagmus research questions answered – question 8

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 8: Are there drugs to treat other conditions that might also work with nystagmus?

(JS) There are drugs which are already used for conditions which have nystagmus as part of them. For example, there are spinocerebellar ataxias which neurologists would generally deal with. These conditions involve difficulty with balance, coordination and also sometimes episodic nystagmus. These conditions, which can be caused by genes, sometimes respond to drugs we would normally use for blood pressure. This is a classic example of why genetic testing is a good idea. You would never give a child a blood pressure tablet otherwise.

Secondly, it is really likely that there are drugs which we use already for other conditions. For example, there are drugs which we know cause increased pigmentation as a side effect. This is just asking to be looked at for people with albinism. There are lots of drugs like that and also other more complicated mechanisms. So part of the study we are doing is to bung a shed load of drugs that might have some benefit on these cell assays and see if they start to work and then follow them up.

So, I think the answer is absolutely, yes.

In response to a direct question there was some discussion about the use of cannabis, to which the conclusion was that anything which helps a person to relax, whether that be a walk or listening to some music can help dampen the nystagmus temporarily.

There was a further question about lifestyle and diet to which the answer was that certain retinal conditions are sensitive to levels of vitamin A in the diet, but in the case of nystagmus the advice does not currently go beyond normal guidelines for a healthy life style, based on available evidence.

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.