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

The logo of Glaucoma Awareness Week 2022

Glaucoma Awareness Week 2022

The Nystagmus Network is marking Glaucoma Awareness Week 2022, the UK’s national week to raise awareness of glaucoma. The theme for this year is ‘Put your sight in the spotlight’, and we are supporting the initiative by encouraging everyone to have a regular sight test.

Glaucoma is the name of a group of eye diseases that damage the optic nerve, responsible for transferring visual information from the eye to the brain. Damage to the optic nerve can result in sight loss and even blindness. Over 700,000 people in the UK have glaucoma, and half of them don’t know they have it. Anyone can develop the disease, though some people are at higher risk, including those with a family history of glaucoma. The disease is fairly rare below the age of 40, but the risk rises over the age of
40 and continues to increase as we get older. One in 10 people aged 75 or over are affected by glaucoma. People of African-Caribbean origin are also four times more likely to develop the disease than people of European origin.

Glaucoma can be symptomless, meaning a large percent of the peripheral vision can sometimes be lost without even noticing, due to the brain filling in any gaps in vision. For most people, the signs of glaucoma are first spotted at a routine eye test.

Glaucoma UK’s Chief Executive, Joanne Creighton, says“This Glaucoma Awareness
Week, we want people to put their sight in the spotlight by encouraging them to get their
eyes regularly tested. With an ageing population and modern technology making earlier
detection possible, more and more of us will find ourselves affected by glaucoma. If you
are living with or have recently been diagnosed with the disease, Glaucoma UK is here to
support you.”

For more information about this year’s Glaucoma Awareness Week, visit www.glaucoma.uk/glaucoma-awareness-week or join the conversation on social media using #GlaucomaAwarenessWeek.

A young child undergoing a health check

Joint letter calls on health leaders to improve eye care for children and young people with learning disabilities

From the Visionary newsletter:

SeeAbility’s Eye Care Champions have led the writing and submission of a letter to the Secretary of State for Health and Social Care and Chief Executive of NHS England with their easy read ‘manifesto’ for better eye care for people with learning disabilities. This submission has been supported by Visionary and over 80 other charities, including the Nystagmus Network, individuals and organisations who also want to see improvements. The letter to health leaders singles out three key calls being made by the Eye Care Champions (opens Visionary website):

  1. NHS England continues with the expected rollout of its NHS Special Schools Eye Care Service, as progress has stalled.
  2. That every new Integrated Care System has a community learning disability eye care pathway.
  3. To ensure everyone with a learning disability is eligible for NHS sight tests, as people with learning disabilities are at such a high risk of having a sight problem.
The logo of BIOJ.

Nystagmus in Down Syndrome – a Retrospective Notes Review

Nystagmus has been reported in up to 30% of people with Down Syndrome (DS), and yet is still not well understood. This study, by a team at Moorfields Eye Hospital, aims to characterise the clinical features of patients with DS and nystagmus. It is recently published in the British and Irish Orthoptic Journal (BIOJ).

The article sheds light on the different types of nystagmus which can be present in someone who has DS and, in particular, that these can arise from a variety of causes, not always linked directly with DS.

Full clinical assessment of the nystagmus is needed in order to inform support and management of the sight.

Read the full article in BIOJ online here

Hands raised in the air in silhouette against a blue sky.

Volunteer for us!

The Nystagmus Network is a little charity with very big ideas. Do you want to be part of our exciting journey?

If you have the skills and time to give for just a couple of hours a month to support the work of the Nystagmus Network, we’d love to hear from you. Whether you’d like to provide IT support, flex your digital skills, help with fundraising, manage our online shop and post out orders or organise some local get togethers, please get in touch. Thank you.

Email us at [email protected]

The hands of someone working at a desk.

Nystagmus awareness at work

A guest post

After my first proper job following university, I decided to ‘come out’ about my disability and support needs. I was worried this might make me stand out for the wrong reasons, but felt it was important to be my own advocate.

It was a positive move and I get lots of support and adaptations at work in my new job.

But, with remote working, I felt I was ‘back in the closet’.

Homeworking has been a revelation. It suits me so much better. There’s no commuting and the stress of getting my train, more screen breaks and no setting up the desk each day. I’m all set up at home with lots of natural light and my big screens. No hot desking!

The downside is that people are no longer seeing me every day, passing my workstation. On Zoom they don’t notice my eye movements, my head turn, they can’t see the large print papers on my desk or my wide screens. People have forgotten I have nystagmus.

I’ve found it something of a demeaning experience to have to go through it all again with my manager and my teammates, but the positive outcome for me is that home working is considered a reasonable adjustment and is now written in to my contract.

My message is ‘don’t let people forget about us’. We’re not working for their convenience. Things can still fall through the cracks. I want to work in an environment that lets me shine.

Do you have a nystagmus at work story you’d like to share for Nystagmus Awareness Day 2022? If so, please email us at [email protected]

Download our guide to Nystagmus and Employment here

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

It’s so nice to be appreciated

In 2021 the Nystagmus Network supported 591 people to come to terms with nystagmus, to find the support and information they needed. We’re even busier in 2022, as more and more people find their way to us and join the virtual nystagmus community. It’s so rewarding when the people we support show us their appreciation.

Here are just some of the lovely things that people are saying about us:

About our Parent Power workshops: “Thank you for setting up today’s workshop. It was really helpful.” … “Thank you – it was wonderfully informative and extremely helpful. Can highly recommend.” … “Thank you so much – it was incredibly insightful and thoroughly worth the time.”

About our monthly forums: “I’ll look forward to the forum next time. It’s nice to keep in touch. It’s part of what makes the Network special.” … “It has been wonderful to hear/speak/learn from all of you and your experiences, to speak to parents with similar challenges. I look forward to attending future parent meetings. Thank you for setting this up!”

About our Information and Support Line: “Huge shout out to the Nystagmus Network for the most informative chat about congenital and acquired nystagmus. Your guidance has been invaluable.” … “Thank you so much for your invaluable advice. Please keep doing what you do.”

About our information documents: “We’re quite early on in learning about our son’s nystagmus and how it affects him and the Nystagmus Network has been so helpful so far. The resources available have explained so much.” … “ I am a big fan of your resources and have found them really helpful.” … “I’ve just read the PDF ‘Nystagmus and benefits’ and found it really interesting, thanks for summarising a lot of info in an ‘easy to understand’ way.” … “. I just wanted to let the charity know that I’ve found the PDF documents really useful so thank you.”

About our Facebook page: “Thank you for all your advice over the last few years, even though it’s taken me nearly 40 years to realise my condition. If only I had known back there I would have been in my teens and the help would have been great. You do a great job getting it out there.” … “I just made my first donation for research! I have AN and Oscillopsia. Fortunately, 12 weeks of neuro rehab with specific eye coordination exercises has helped me be able to walk and jog on the beach near my home. Each mile accomplished is taken with gratitude for the work and support that Nystagmus Network brings. Thank you for all you do!” … “Thank you for the excellent work carried out by the Nystagmus Network. Through it, I’ve learned more about how to live well with my condition in the last few years than I ever thought possible!”

On our Acquired Nystagmus away weekend: “We had a lovely time last weekend and I cannot thank you enough for all the work you put in to make this event so successful.” … “It was so lovely to meet you all in Bath and, whilst tiring for us sufferers, was a great opportunity to chat on a more personal level. We had a great connection and got on so well. I felt like we could see (and appreciate) our individual characters, despite the very troublesome nystagmus. Thank you so much for arranging this.”

Hanni negotiating a rock with two walking poles on Scafell Pike.

Hanni’s nystagmus story

Whilst the trustees oversee strategy and guide the direction of the charity, overall management and day-to-day operations are in the capable hands of our small dedicated staff team. Hanni is the newest member of the Nystagmus Network staff team. This is her nystagmus story, in her own words:

When I was diagnosed with nystagmus in October 1987, my parents were told 3 things: I wouldn’t drive, I wouldn’t go to mainstream school and I wouldn’t ride a bike. Devasting news for first time parents. But wow, have I proved those doctors wrong!

Not only did I go to mainstream school, I achieved 10 GCSEs, 4 A Levels and a 2:1 BA (Hons) in Primary Education. I secured my first job in a Montessori nursery (yes, there were lots of turned down job applications along the way, but determination got me through) and I then went on to complete a Diploma in Montessori Early Childhood and Pedagogy. My greatest achievement during this time was leading an Outstanding Ofsted inspection as Manager of a 40-place nursery. I then became a Managing Director of a small collection of nurseries, alongside 2 colleagues. I now work for the Nystagmus Network.

As a teenager I did a local paper round, on my bike. Going a familiar route and/or following my dad who would call out instructions or hazards made this possible.

I love to travel and have done so through university (teaching in India for 2 weeks), and more recently with my husband to Vietnam, Italy and Croatia. I find bright sunshine a real challenge and so I’m heavily reliant on my husband guiding me, particularly when it comes to negotiating steps and busy places.

Since having my son in 2018 (who has incredible sight), it has instilled in me how important it is to normalise disability. At three 3 and a half he is already learning how to help me: pointing out steps, describing where something is and telling me what he can see.

I take up offers of help and support, eg cane training, PIP, use of a Blue Badge and discounted theatre tickets. These make everyday life more accessible for me. 

Nystagmus is part of me and makes me who I am today. I challenge myself to do things that I know will be difficult: I travelled to Shanghai on my own to visit a friend and in 2011 I climbed Scafell Pike, with my now husband. This was an immense challenge: the uneven ground and countless steps made it particularly difficult for me.

I want to show people that having a disability doesn’t have to limit you. Yes, I have had to work harder than others but I’m proud of what I’ve achieved.

Harshal Kubavat headshot.

Thank you, Harshal

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.

Would you like to join our trustee team?

Vivien (left) and Sue shaking hands.

Thank you, Vivien

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.

Watch the story of the Nystagmus Network on video here

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