Sharon Clifford

Sharon’s nystagmus story

This Nystagmus Awareness Day we’re asking you to share your story.

You can share your nystagmus story here

This is Sharon’s story …

My nystagmus story started October 2017 when my son was 10 weeks old. He just hadn’t seemed right all day, refusing to feed. I’d taken him to the GP. Fairly happy with a mild urine infection we were getting up to leave as the GP suddenly asked me “Do his eyes always do this movement?” I couldn’t be sure I’d ever noticed and, if I had, that I’d realised it wasn’t normal for a young baby. 30 mins later, scared of what was happening, we were in the hospital undergoing various tests, including an emergency CT scan as doctors feared brain damage was causing the nystagmus – a word I’d never heard of but have spent many hours googling since. After a painful 24 hours we were given a diagnosis of most probably just a visual impairment.

Thankfully a month later a MRI ruled out any brain abnormality.

It took another 2 years of appointments at St James’s in Leeds and with Professor Gottlob’s team in Leicester before genetics confirmed oculocutaneous albinism, type 1b. Although we were told this was a likely diagnosis at our first eye appointment, having the confirmation felt like a huge milestone to recover from the stress caused by that first day of our journey. With many health issues and hospital admissions early on, HPS (Hermansky-Pudlak Syndrome) was considered but ruled out in January 2020 just before my daughter, who doesn’t have albinism, was born.

We met our QTVI 2 months into our journey who invited us to their fortnightly VI parent and child group, a group I’ll be forever thankful for. I struggled to relax in baby groups where my child was noticeably behind his peers by this point and we did struggle to put the stress of that first 24 hours behind us. This group gave me the space to talk about that. I’m so happy to have been able to give something back to this group when, during covid, I and my children helped them record videos of activities to send to new families who had been referred to them when home visits and support groups were not allowed. I couldn’t imagine not having this group in our early days.

I found the Nystagmus Network during my many hours of googling and attended the Birmingham open day where I learnt so much about nystagmus and met other families just like us. From that day I always knew I’d want to be more involved in the charity and use skills I have from my work in something that means so much to our family.

The journey so far hasn’t been easy in many ways but I’ve found it’s always full of surprises that I’ve least expected including my son being 1 of 2 children with nystagmus in his class at school and overcoming gross motor delays, thanks to help from OTs and physio, to learn to ride a bike unaided at age 4. Being in second year at primary, we’ve got a long way to go and I’m sure there will be many more mountains to climb along the way but when I look back to that first night nystagmus was mentioned to me I can’t believe how far we’ve come.

A person wearing a doctor's white coat is testing a patient's eyes using clinical equipment.

The Fight for Sight/Nystagmus Network Small Grant Award

We are delighted to announce that the Nystagmus Network has jointly awarded two new nystagmus research grant awards with our funding partners Fight for Sight.

The two successful applicants are

  • Dr Mahesh Joshi at the University of Plymouth is carrying out a pilot study to investigate whether a new computer-based treatment approach can help improve vision for people with nystagmus.
  • Dr Mervyn Thomas at the University of Leicester is developing a new experimental model that could pave the way for the development of new treatments that can help improve vision for children with nystagmus.

Vivien Jones, Hon President of the Nystagmus Network and Chair of the Research Committee, said: “We are delighted to announce with our partners Fight for Sight our support for these exciting research projects. The work by Dr Mahesh Joshi and Asma Zahidi at Plymouth will hopefully significantly enhance knowledge about eye movements and, in the case of Dr Mervyn Thomas at Leicester, lead to an enhanced ability to test treatments for infantile nystagmus.”

To help ensure that the Nystagmus Network can continue to invest in nystagmus research, please consider making a donation to our research fund. Thank you.

Donate to our nystagmus research fund here

Child with albinism.

The impact of glare on reading

Researchers are investigating the impact of glare on young children with albinism and nystagmus to help ease important day-to-day tasks like reading.

Jointly funded by Nystagmus Network and Fight for Sight, a team of researchers at the University of Leicester will be investigating glare in patients with infantile nystagmus.  

People with nystagmus often experience glare, but this has not been researched thoroughly despite the discomfort it can cause and the impact it has on reading.  

Led by Dr Frank Proudlock, the study will measure the effect of glare by testing reading overlays, tinted contact lenses and other means.

Although there are several devices that doctors use to measure glare in eye clinics, few of them have been tested as to how well they measure glare in nystagmus. Also, it is very difficult to measure glare in young children.

The team at University of Leicester will study four groups of people: people with albinism; people with idiopathic infantile nystagmus; people with achromatopsia; and people without nystagmus.

The team hopes the study will help doctors to make reliable measurement of glare in people with infantile nystagmus, especially in young children.

Understanding how glare can affect reading in people with infantile nystagmus and ways of managing it will help provide useful information to parents, teachers, doctors and patients to come up with the best solutions for reading at home, work and at school or university.

Keith Valentine, Fight for Sight CEO said:

“We’re pleased to continue our important partnership with the Nystagmus Network, funding these vital projects. With one person in every 1,500 people having nystagmus, it’s vital that we fund research that can help improve lives and make sure children and adults with nystagmus live their lives to the fullest.”

Donate to the Nystagmus Network research fund here

Dr Rufai speaks from a podium with a large screen behind him showing slides.

Congratulations, team Leicester

Leicester research team awarded prestigious prize from the Royal College of Ophthalmologists

Image credit: Royal College of Ophthalmologists

A team of specialist eye doctors at the University of Leicester have received a national award for their work, which will improve diagnosis and management for children with nystagmus. The study was jointly funded by the Nystagmus Network and Fight for Sight.

The Royal College of Ophthalmologists has awarded the prestigious Ulverscroft David Owen prize to Dr Sohaib Rufai, NIHR Doctoral Fellow in Ophthalmology and his colleagues at the University of Leicester Ulverscroft Eye Unit.

Dr Rufai’s team were the first in the world to use handheld OCT to predict successfully the future vision of young children with congenital nystagmus.

On receiving the prize, Dr Rufai said: “It is a tremendous honour to receive this award on behalf of my team. I’m grateful to my mentors and colleagues at Leicester: Professor Irene Gottlob, Dr Mervyn Thomas and Dr Frank Proudlock. … We dedicate this prize to the wonderful children and families who supported this research.”

Read the full story on the University of Leicester website

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!
The logos of Fight for Sight and the Nystagmus Network

Two new nystagmus research projects funded

Fight for Sight and Nystagmus Network are funding research into the impact of glare in infantile nystagmus and albinism in the hope of improving outcomes for people with the condition. People with nystagmus often experience glare, but until now this has not been researched thoroughly.

The team at University of Leicester, led by Dr Frank Proudlock, will study 4 groups of people: with albinism; with idiopathic infantile nystagmus; with achromatopsia; without nystagmus. They aim to determine the most effective way to measure glare, its impact on reading and whether tinted glasses or reading overlays can help. It’s hoped that a better understanding of the impact of glare will help parents, teachers, doctors and people with nystagmus to come up with the best solutions for reading in their education, work and day-to-day life.

A further small grant award to Leicester

Dr Mervyn Thomas, also of the University of Leicester, has won the Fight for Sight/Nystagmus Network funded small grant award for a nystagmus related research project. The work, delayed from 2020 due to the COVID pandemic, will now start later this month.

Vivien Jones, chairman of the Nystagmus Network’s Research Committee, said: “The Nystagmus Network is delighted that its joint funding relationship with Fight for Sight has led to two awards – first to Frank Proudlock for his winning bid for a PhD student post. We greatly look forward to seeing important research flow from this appointment, which will start later this year and represents the biggest-ever single investment by the Nystagmus Network in research. We are equally pleased to see that Mervyn Thomas has won the small grant award for his proposal to develop a low-cost system for the recording and analysis of eye movement characteristics, suitable for clinic-based assessments.”

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

A young child's eyes.

How well will my child see?

Researchers from the University of Leicester have identified a new way of predicting the future vision of children with infantile nystagmus. The research, published in the journal Ophthalmology has developed a grading system for retinal development in infants and young children with the condition, providing an important tool for ophthalmologists to determine their future vision.

This new research, funded by Fight for Sight and the Nystagmus Network, highlights for the first time that we can use this existing grading system to predict future vision in children and infants with nystagmus. Importantly, it is more reliable than the current tests used.

Infantile nystagmus is a condition of involuntary (or voluntary, in some cases) eye movement, acquired in infancy or later in life, that may result in reduced or limited vision. It affects approximately one in 500 people. Due to the involuntary movement of the eye, it has also been called “wobbly eyes”, and often comes with a negative social stigma.

Nystagmus can be challenging to diagnose in children and often the level of sight loss a newly diagnosed child will experience is unclear, leading to significant anxiety for parents who fear their child will develop severe visual impairment.

With the advent of hand-held optical coherence tomography (OCT) – a non-invasive imaging test that uses light waves to take cross-sectional images of the retina – healthcare professionals are now able to obtain detailed information about the status of retinal development in young children and infants. These scans can be obtained in a few minutes and can be performed non-invasively in children.

In 2011, lead researcher, Dr Mervyn Thomas, had developed a grading system based on optical coherence tomography (OCT) for arrested retinal development and found that this system is able accurately to predict the prognosis of vision in children and adults with arrested retinal development.

Dr Mervyn Thomas, said “This study required a lot of patience and cooperation from our nystagmus patients and families. The result is now we have a validated method of predicting prognosis in children and infants with infantile nystagmus. This will allow clinicians to plan better for patients whose vision is likely to be worst affected by nystagmus, while also helping to reassure and enable patients and families to optimise the development and educational attainment of the child during this crucial, formative stage.”

Fight for Sight’s Head of Research and Policy, Dr Rubina Ahmed, said “This grading system is a positive step towards better care for children with infantile nystagmus and will help to allay concerns of parents with unanswered questions related to visual development and prognosis for their children and may in future lead to better care plans for individuals.”

Sue Ricketts, Executive Information and Development Manager at Nystagmus Network, said “This development highlights the importance of research investment in nystagmus diagnostics and also answers the question most parents of newly diagnosed babies have: How well will my child be able to see?”

This research was jointly funded by Fight for Sight and Nystagmus Network via the Small Grant Award, awarded to Dr Mervyn Thomas and Professor Irene Gottlob.

Mervyn smiles for the camera.

Handheld OCT can predict future vision in infantile nystagmus

Dr Mervyn Thomas of the Ulverscroft Eye Unit, University of Leicester developed a grading system for arrested retinal development as a med student in 2011. 8 years later the team shows it can predict future vision in preverbal children with nystagmus.

This development highlights the importance of research investment in diagnostics and also answers the question most parents of newly diagnosed babies have: How well will my child be able to see?

Read the full article from the American Academy of Ophthalmology here.

Nystagmus Network UK research workshop 2019.

UK Nystagmus Research Workshop

The Nystagmus Network is today hosting the UK Nystagmus Research Workshop 2019 at the School of Optometry and Vision Sciences, Cardiff University. Delegates are joining us from the 6 UK centres of nystagmus research excellence. These are:

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

All delegates will also be attending the Nystagmus Network Open Day 2019 at the Principality Stadium, Cardiff on Saturday.