We;re inviting everyone to share their nystagmus story in their preferred medium this Nystagmus Awareness Day. Andy has chosen to make a video.
You can share your story here
This is Andy’s story …
Sue’s nystagmus story
This Nystagmus Awareness Day we’re asking you to share your story.
You can share your nystagmus story here
This is Sue’s story …
My nystagmus story begins in 1991 when the daughter I’d always dreamt of having was born. She was perfect.
Just imagine the shock when, 6 weeks later at baby clinic, a doctor virtually leaped across the table at me and told me my perfect baby girl was blind.
She wasn’t blind, of course, but I knew there was something wrong with her eyes.
So, I went to my GP for more information. I came away with a compliment slip bearing just one word – ‘nystagmus’ – and an urgent referral to the eye hospital.
That was the longest two weeks of my life. There was no internet in 1991, so I couldn’t even google it.
At the eye hospital the diagnosis of nystagmus was confirmed and the stark pronouncement that she would never drive.
But I was more interested in the first 17 years. Would she learn to read and write, go to mainstream school, make friends?
And later, would she go to university, have a successful career? Would she find love and get married?
Luckily, I was also handed a leaflet about the Nystagmus Network, a national charity founded by a Mum just like me.
The call I made that evening to the support line literally changed my life. Over the years the Nystagmus Network has helped me learn about my daughter’s condition, how to support her and guide her through school, university, into employment and help her lead her best life.
I can tell you now that my daughter has achieved all the things I hoped she would and so much more. If only I’d known back then, maybe I wouldn’t have worried so much.
There have been so many proud parent moments, not least her wedding day earlier this year. It’s true she’ll never drive, but my son-in-law assures me that she’s an excellent navigator.
That little girl I worried might never learn to read now has a degree in philosophy and a career in communications.
She’s taught me so much about life and love and, thanks to her, I’m enjoying a late, second career, working in an organisation where I can help parents just like me and make a difference for people with nystagmus like her.
My daughter and I are still learning about nystagmus together and I’m so pleased to be able to share our story with you.
But when I’m with her, to misquote Snow Patrol, “all that I am, all that I ever was is there in her perfect eyes. They’re all I can see.”
John’s nystagmus story
This Nystagmus Awareness Day we’re asking people to share their story.
You can share your story here
John’s nystagmus story is a letter to his 9-year-old self
To the best of my recollection, I was about eight or nine when I really began to worry about nystagmus. Most of all, I worried about what I could not see and what I might not be able to do.
Even before I was eight, I knew that how I see the world is different from most other people. That explained the regular visits to eye hospitals. But I didn’t really understand how differently I see the world. I’m not sure I do even now, almost 60 years later. But I know a lot more than I did then. And if I’d known then just half of what I know now life would have been so much easier.
That’s the reason I’m writing this letter. Not for me, but for those of you with nystagmus who are eight or nine years old now. And for your parents, families and friends. And indeed for anyone – teachers, classroom assistants, doctors, opticians and orthoptists – who meet you.
The first point I want to make is that having nystagmus is not as bad as some people think. Yes, nystagmus can be a nuisance, but it shouldn’t ruin your life. I know a lot of people with nystagmus and am amazed at what they do, from acting and singing and writing and playing music to being doctors and teachers and successful business people.
Secondly, it’s easy to fixate on what we can’t do – or struggle to do – because of nystagmus (catch a ball, drive a car, become an airline pilot, etc). Instead, my advice is to focus on what you can do. For instance, catching a ball is hard with nystagmus, but you’ll find all kinds of sports and activities that you CAN DO.
True, most of us with nystagmus can’t see well enough to drive, but we can and do travel and get around. By the way, personally, I enjoy being driven around. And it’s great not worrying about parking a car, petrol prices or being a taxi driver for other people.
In my experience then we can do most things, even if sometimes we have to be a bit creative and flexible. In fact, it’s entirely possible that having nystagmus helps us “think outside the box”. And that’s a very useful skill to have.
Thirdly, I have a piece of advice. You do need to talk about nystagmus. This can be hard, but think of it this way: most other people – even grown-ups – have no idea what it’s like to have nystagmus unless we tell them. So they can’t help us unless we say what we see – or don’t see.
If you think about it, there’s a lot to tell people. How do they know our world doesn’t move all the time? That it’s tiring doing close work, especially with numbers. That things around us aren’t always quite where they seem. That it’s frustrating that other people see us long before we see them. That it makes you sad to be picked last for a sports team. That teachers forget we can’t see what’s on the board. That finding friends in the playground or a word on a page is hard.
The good thing is that if you talk about nystagmus and how it affects you, most people are interested and want to help. They will change the way they do things. They will give you a seat near the front. They will read out the restaurant menu that’s too far away and / or too small for you to see.
And that’s a point worth remembering. The problem isn’t with you or your eyes, but with how the world around you is designed. The menu is TOO FAR AWAY. The print size is TOO SMALL.
My final point is that it’s wrong to say – as some people do – that we can’t do anything about nystagmus. Yes, I know that doctors can’t cure nystagmus – at least not yet. But, as hopefully I’ve explained above, there are lots of little, everyday things that we and doctors and family and friends and everyone around us can do to make our lives easier.
So, don’t despair or feel sad. Talk about nystagmus and focus on what you can do. You might surprise yourself!
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.
James’s nystagmus story
This Nystagmus Awareness Day we’re asking you to share your story. This is James’s story.
You can share your story here
Until my son Sullivan was born, we as a family had no idea what nystagmus was, that there was a charity called Nystagmus Network and a wonderful community available for support.
We noticed within a few weeks of Sullivan being born that something wasn’t quite right with his eyes. After several doctors and hospital appointments and being told repeatedly ‘‘He’s only a baby, stop worrying’’ we finally found out Sullivan has nystagmus, with ocular albinism.
Receiving this diagnosis was hard to take. As a parent you want to do everything you can to protect them. You also have the initial shock which clouds your rational thinking – which is something I have noticed through the Nystagmus Network forums. Panic is the first reaction which is only magnified once you turn to Google – Never turn to Google!
As a few weeks passed and further appointments were made at Moorfields Eye Hospital with the incredible Maria. Maria is unbelievable. She was available for video calls and in person appointments – Maria has also supported Nystagmus Network events, so something to keep an eye out for!
Our story with the Nystagmus Network started with the Facebook Parent Forums, which provided our first chance to speak with other parents with children with Nystagmus. Its hard to explain how beneficial that was and still is today! Once meeting some of the trustees and most importantly Sue, I decided to focus on local fundraisers in Jersey with an annual Nystagmus Golf Day and I’m now proudly a trustee.
Sully is now 3, due to start pre-school this September and primary school the year after. It’s from there I feel his struggles will be more noticeable. But we will deal with them as they come. This is only the start of our nystagmus story with great things to come.
If anyone with Nystagmus is to read this, then please get in touch with the charity or myself directly!
James
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
Nystagmus Care Pathway published
Publication of Clinical Practice Points for managing nystagmus in childhood
The Nystagmus Network has welcomed the publication of new guidance on the management of nystagmus in children by the Royal College of Ophthalmologists.
The purpose of the Clinical Practice Points, now available on the Royal College website, is to provide a single point of reference for busy clinicians when managing patients with this complex eye condition.
The Practice Points can be found online here
The Nystagmus Network contributed to the development of the Practice Points through its membership of NUKE, the nystagmus UK eye research group. Members of NUKE worked together to develop a Nystagmus Care Pathway which sets guidelines on diagnosis and care for patients with nystagmus – the first time such guidelines have been created for this condition.
Vivien Jones, founder and Honorary President of the Nystagmus Network, said “The adoption of these guidelines means that clinicians can now refer to them when treating patients with nystagmus – something that we hope will lead to continuing improvements in developing standardisation of medical diagnosis and care.”
Clinician Jay Self, University of Southampton, an author of the Practice Points and founding member of NUKE said “Managing children with nystagmus can be complex and nuanced. By sharing best practice, in an easy to follow guide, we hope to improve all aspects of care for children and their families.”
Coinciding with the publication, Nystagmus Network trustees met Marsha De Cordova MP, who chairs the Eye Health and Visual Impairment All Party Parliamentary Working Group. Trustees were able to brief the MP, who herself has nystagmus, on the future impact of the work that has been done and the publication of the Practice Points.
Marsha is pictured above (centre) with Nystagmus Network trustees Peter Greenwood (left) and Harshal Kubavat (right).
Thank you, Richard
We are sorry to share the sad news that Richard Wilson, Chairman of the Nystagmus Network from 2011 to 2019, passed away over the Easter weekend.
Richard’s contribution to the work of the charity and the nystagmus cause is immeasurable.
His most notable achievements include our first ever clinical training day, the introduction of an annual UK nystagmus research workshop and, of course, Nystagmus Awareness Day, which we first celebrated nationally and internationally back in 2013.
Of that day Richard himself said:
“What a momentous day this has been. I am hugely proud to hold the chairmanship of the Nystagmus Network at this time. We have done something very special today. Brilliant people doing truly brilliant things. Perhaps we should do it again? But for now, let us just reflect on this success and sleep well knowing we have changed perceptions and some attitudes.”
Just a few days ago Richard urged charity trustees and staff to “Keep doing all the great stuff for the Nystagmus Network! And keep smiling.”
Thank you for everything, Richard, and we promise we will! – from all of us at the Nystagmus Network
Remembering Richard
Sue at VIEW
Nystagmus Network’s Sue Ricketts travelled to Birmingham last week for the annual conference of VIEW, the national body representing Qualified Teachers of Visually Impaired children and young people (QTVIs).
Delegates were treated to presentations on the latest thinking on special educational teaching and support, including responses to the recent SEND reforms.
Sue was part of the exhibition, ensuring that teachers and support staff had all the resources they needed to signpost families to the Nystagmus Network for support and information. There was overwhelming praise for our digital guides, with ‘Wobbly Eyes‘, the booklet for young children, again proving the most popular, followed closely by ‘Nystagmus and Driving‘ and Sue took the opportunity to introduce our latest publication, the Nystagmus exams guide.
There was lots of interest, too, in our online book shop, featuring ‘Can I tell you about nystagmus?’ by Nadine Neckles and the newly published ‘She will never…’ by Amanda Harris.
In the run up to Nystagmus Awareness Day on 20 June, with our 2023 theme ‘Share your nystagmus story’ we are making available lesson plans and Powerpoint presentations for teachers and their pupils. We hope that these resources will not only raise awareness of nystagmus in schools but also help children and young people living with nystagmus feel better understood and more included.
Parents and carers get together
Parents and carers of children and young people with nystagmus are warmly invited to our first Parents’ Get Together of the year. We are delighted to share that Becky Hyams will be joining us as our special guest. Becky is a second year university student, studying Advertising and Digital Marketing. She has nystagmus herself. She will be sharing her experiences of school, university and also how she wants to raise awareness of disability to help educate others. Becky has created her own blog and social media accounts, ‘beckys.blurred.perspective’ to help achieve this.
If you’d like to receive an invitation to the get together on Tuesday 21 February from 7.30pm, please email us at [email protected]