nystagmus – Page 4 – Nystagmus Network

Robyn stands in a garden, wearing a Nystagmus Network T-shirt.

Robyn’s nystagmus story

All this week we’ve been sharing your nystagmus stories to help raise awareness of nystagmus for Nystagmus Awareness Day 2023.

Robyn was first observed to have wobbly eyes at the age of 5. With no family history of nystagmus, it quickly became concerning as to what was the cause. Robyn was seen by Ophthalmology who referred her on for what felt like every test going. CT head, X-rays, blood tests, ultrasound scan, referral to Neurology, Electro-Retinographic studies. Which she took all in her stride. My worry went from the possibility of nystagmus to the chance her wobbly eyes could be caused by something much worse. Thankfully, 18 months later, all tests clear, she was given a diagnosis of Congenital Idiopathic Nystagmus. It was at this point I discovered the Nystagmus Network.

Robyn, now age 7, will say there’s nothing wrong with her eyes, they’re just a bit wobbly. As a parent you worry about the now, and you worry about the future. However, Robyn’s love for life and pure determination have shown me I don’t have to be so worried. The hurdles she comes across she takes in her stride and discovers solutions for her to manage them in her own way. While she may not be able to hit certain expected milestones such as learning to drive and riding a bike is something we still haven’t quite mastered, despite the many tries (!) we’re able to celebrate other aspects of life and achievements#, from running races on sports day to threading beads onto string and an upcoming ballet exam she is determined she will get top marks in. I have been so incredibly grateful to the Nystagmus Network for all the information they have and support they offer. We will both continue to learn and adapt to future challenges, but I shall take heed from Robyn’s determination and resilience in how we face them.

Isabelle’s story

If you’d like to share your nystagmus story to help raise awareness we would love to hear from you.

Share your story here

This is Isabelle’s story …

I was diagnosed with congenital nystagmus as a baby. My mum didn’t know anyone with the condition and had never heard of it, as most people haven’t. We didn’t learn that I have ocular albinism, that causes my nystagmus, until I was around 14. We discovered this through doing some tests in a hospital in London.
I wore glasses from 6 months old until I was 13, but came to the conclusion that glasses didn’t help at all.

Having nystagmus has impacted my school life significantly, but never stopped me from achieving my goals. Going to mainstream school, as most children do with nystagmus, it can be difficult navigating being “different” from other children, especially when those differences are noticeable. However, I found just being confident and proud of my visual impairment helps so much. I am now at university, which some days I didn’t think would be possible, but if you can believe it you can achieve it!

One of the biggest impacts nystagmus has had on my life so far is not being able to drive. I’m only 19, but when I turned 17 it was hard watching all my friends pass their driving tests and start driving. I felt like the only person that wasn’t allowed to drive. Over time, I realised that being the passenger has so many perks and I’m definitely not alone.

Throughout my life with nystagmus, I’ve had many people of all ages make comments or ask questions. When I was younger I would get upset when another child said something that maybe wasn’t worded very nicely. I’ve come to realise that it’s just a lack of knowledge, as nystagmus isn’t a well-known condition throughout society. It can be awkward, upsetting and triggering when someone points it out or makes a disrespectful comment, but simply describing my disability to them is always the best way to help someone understand.

Having nystagmus was my biggest insecurity through my childhood. It was quite noticeable, especially through the way I have to tilt my head to look at people. People not knowing what it is can be a struggle, as I can do things differently from others to make it easier for me with my impairment. However, I’ve grown to love it and be proud of the way I navigate life alongside it.

Being visually impaired has impacted me in even the smallest of ways that we had never thought of when I was younger. Things like going to concerts and not being able to see the performer, being unable to read the whiteboards in school, getting lost in busy places, not waving back to people on the street as I didn’t see them, the list is endless. However, I’m grateful for the things I can see and the lessons it has taught me; everything will be okay in the end. Just because I have nystagmus, doesn’t mean I can’t achieve my goals.

It has caused many obstacles and I’m sure it will cause many more, but I know that I’ll get through them with the support of my family, friends and charities such as Nystagmus Network. My eyes are beautiful and so are yours!

Savannah wears a yellow polo shirt and blue-framed glasses.

Savannah’s nystagmus story

We are sharing your stories of nystagmus to help raise awareness of the condition.

You can share your story here

This is Savannah’s story

Savannah’s Congenital Nystagmus was noticed by the Public Health Nurse at her 3 month check-up. She referred her to CUH Opthalmology and it was confirmed Congenital Nystagmus at around 6 months old. It never really affected her as a baby apart from not being able to see us from across the room. She would just follow our voices or her toys would have to be placed close to her. Even now she has her own little ways of making things easier for herself!
Savannah successfully completed 2 years of preschool with very few obstacles or problems and is now just finishing Junior Infants. At school Savannah has a lot of support from both her wonderful teacher and her amazing SNA, Helen. She also has a magnifier which was kindly granted to her from NCBI which makes life a lot easier as she can see the board and books and anything around the classroom from her desk just like all her friends, who are all so kind and patient and understanding with her. They don’t see her as visually impaired, they just see her as Savannah.
Back in April Savannah took part in a Para Athletics Event in the Mardyke Arena, Cork where she achieved first place in her race. She ran it completely unaided.
She is a bubbly, happy little girl who doesn’t let her visual impairment stop her from trying anything! Savannah is very open about the fact that she has Nystagmus and isn’t afraid to ask for help when she needs it.
Hospital appointments, regular eye tests, several eye infections are all normal day to day life for Savannah and she takes it all in her stride.

Hazel is running a marathon. She is wearing a white T-shirt, black shorts and a bandana.

Hazel’s nystagmus story

Thank you to everyone who has shared their story for Nystagmus Awareness Day 2023 to help people understand the condition better.

You can share your story here

This is Hazel’s story …

I have had nystagmus my whole life associated with the childhood cataracts and related surgeries I had as a baby, but it was not until I was an adult that I learned it was a separate condition. Nystagmus is the wobble. No matter how hard I try my eyes move about on their own. This can make it difficult to maintain eye contact and sometimes people think you are being rude or are not interested because you are not looking at them when you are in conversation. Everyone is different and it is hard to know what is nystagmus and what is as a result of other eye problems. I don’t see any letters on the chart at the opticians any more and wear strong reading glasses to access large print. Assistive tech helps me keep working and I now use a long cane to help maintain my independence. Yes, some days are hard. There are things I can’t do or things that just take longer but many things I can do. So I have embraced all the opportunities in life that come my way and am grateful for supportive friends and colleagues. I am married with 2 almost grown-up kids, work part time, volunteer as a school governor and a trustee for my local sight loss charity. Two years ago I took up running and ran my first marathon in London in April.

Harshal’s nystagmus story

This year for Nystagmus Awareness Day people are sharing their personal stories to help everyone understand what it’s really like

You can share your story here

This is Harshal’s story …

Our story starts in a nearby shopping centre, with a chance encounter with a friend who was working in the optician’s. She looked at our 6-month-old son, took a pause and then said “Wait here a minute”. She returned shortly after with another colleague who looked inquisitively at our son. They both looked at each other and then turned to us. “I think you should get him checked out” our friend said, in a calm and gentle manner. Our friend went on to say that she’d seen eye movements like our son’s before, but only during her studies and that it was best to get it looked over.

From there, the next 6 months or so are a bit of a blur. Right from the get-go, our consultant was pretty much certain that our son had nystagmus from birth. We always thought we had an inquisitive baby, not even thinking for a second that those eye movements signalled anything else. Nor did any of the friends or parents we regularly met. We had appointments, checks and lots of different tests to rule out anything more untoward and, at the end, we were pretty much in the same place, albeit with more confidence that our son had nystagmus. The consultant said that he would need to have routine check-ups to monitor his vision and that it was too early to tell how much his vision would be impacting his day-to-day life.

Fast forward six years and he is now in the local primary school and experienced his first taste of exams (Key Stage something or another): not that he can remember what he did or when! Thankfully the papers were already in larger text and spaced out, given the age range being tested. But like any cautious parents, we questioned if he needed any adaptations. No was the general response – he’s doing really well generally in his lessons and they will keep a check on him should that change. Life has been pretty uneventful for us when it comes to his nystagmus, with all the classes and clubs going ahead as normal. I don’t think any of his friends remember (or even recognize) that he’s got an eye condition. Thankfully we have just let it play out and he’s like any other child really. Sometimes we question whether he really needs to get so close to the tablet (for his homework), or whether he’s just being clumsy or less attentive when certain things happen. I expect things will evolve as he gets older and that the Nystagmus Network will have a lot of advice and guidance as and when we need it.

So back to the charity. Just after his diagnosis, I found the Nystagmus Network through a quick Google. I signed up immediately and became a member with a simple direct debit, thinking little of it for the first few years. The open days caught my attention but overlapped with work and family commitments so my interactions were limited to reading emails and looking over the resources on the website from time to time. Then a little later (sparked by some communications where the charity was looking for support) came an urge to use my professional background more in my personal life – that’s when I sent off an email to the Nystagmus Network to see if I could be of any help. Fast forward a few years and I’ve had a wonderful time volunteering and more recently as a trustee, helping the organisation provide the valuable support, awareness and breaking new ground in research for those with nystagmus.

From the day of my son’s diagnosis, we knew it would be a part of our lives from there forth. Little did we appreciate that it would also open us to a community that has been curated, nurtured and empowered by the Nystagmus Network. I would like to take this opportunity to say a big thank you, not just to the charity that makes all these things happen, but also to members young and old, with their families who engage with the charity and have shared their incredible experiences and learnings – we are stronger together and shining a greater light on this condition in our own unique ways.

Thank you for reading our story.

Harshal

Eliana is sitting on the floor cuddling a black Labrador dog.

Eliana’s story

This Nystagmus Awareness Day we’re inviting people who have nystagmus or care for someone who does to share their story.

You can share your story here

This is Eliana’s story

I don’t know what your world looks like, but mine probably looks a bit different.

I have congenital nystagmus. That means that I was born with eyes that move involuntarily. I can’t always control them. I don’t really know how to explain it, but I know that seeing and looking makes me tired. I don’t like bright light and loud, busy places confuse me. It takes me a little longer to spot my friends and crossing the road is daunting because the vehicles are fast and loud.

It’s something that makes me different from other people. I am pretty much the same as everyone else in many ways. The same but different.

I am nine and a half. I love animals because they love you, no matter who you are. When I grow up I want to work in an animal shelter so that I can help dogs feel safe.

Nystagmus won’t stop me. Nystagmus can’t stop me.

Nystagmus has given me skills to adapt and feel the world around me. I don’t feel sorry for myself because I am happy being who I am. I accept that I am not an artist and ball sports really aren’t my thing, but I love swimming and horse riding. No one is good at everything after all!

20 June is Nystagmus Awareness Day. People like me, with nystagmus, are sharing their stories so that our world is better understood.

Bryony smiles, wearing a summer dress and holding a glass of wine.

Bryony’s nystagmus story

For Nystagmus Awareness Day 2022 we’re giving you the opportunity to share your story to help others understand the impact of the condition.

You can share your story here

This is Bryony’s story …

I was diagnosed with congenital nystagmus as a baby. I wasn’t really aware of my impairment as a child, only that my eyes were a bit wobbly. I know now that my fears of crowded places and escalators, as well as having to turn my head to be able to look straight at a camera, were as a result of having nystagmus. I remember ball sports being something I hated. There’s only so many times you can enjoy being hit in the face! I was rarely able to read what teachers put on whiteboards at school and felt too embarrassed to say anything. I’m fortunate to have supportive parents who took the time to understand my impairment and did their best to make teachers aware of how it affected me.

My teenage years were when the impact of having nystagmus hit me. The excitement of my first driving lesson soon faded when I wasn’t able to read a number plate at 20 metres. After seeing a specialist I was told I wouldn’t be able to drive. I felt like my chances of independence and progressing in life had been taken away from me. I was crushed, but after a while I became determined to prove that not being able to drive wouldn’t stop me from being successful.

I went on to study Environmental Health at university but not without challenges. An example was at an interview for a third year placement. It was going well until the dreaded question…can you drive? As soon as they found out I wasn’t able to they were no longer interested in taking me on. Again, I was devastated, but more determined than ever as a result.

I graduated with a first class honours degree and moved to London to start my career in Health and Safety. It was the best decision I made. Hardly anyone drove in London and I only had to wait a couple of minutes for a tube, a far cry from the hour wait for a bus back home! My confidence grew and I went on to enjoy 10 happy years living in London.

I now live in my home town of Bristol, with my husband Luke (who I met in London). I work as a Health and Safety Advisor for a FTSE 100 company. Yes I still miss not being able to drive, but public transport is much more efficient now and I get the important role of resident DJ during car journeys! I’m proud of what I’ve achieved, despite having a visual impairment. There are still challenges. I often pass people in the street who I don’t recognise only to find out it was someone I knew, which mortifies me! It also upsets me when I’m not able to see something that others can.

I’d like to say to anyone recently diagnosed with nystagmus, or if you are struggling with the thought of not being able to drive, that having this impairment doesn’t need to define you. My experience is that it makes you stronger as a person and more determined to achieve your goals.

Peter’s nystagmus story

People are sharing their nystagmus stories with us this Nystagmus Awareness Day so that everyone can understand what it’s like.

You can share your nystagmus story here

This is Peter’s story …

The ﬁrst part of my story started shortly after the birth of our ﬁrst son in 2005 when the doctor noticed his eye wobble and we were referred to Kingston Eye Hospital. A diagnosis of nystagmus was relatively quick but the conﬁrmation of the underlying visual impairment, Congenital Stationary Night Blindness (CSNB), took much longer and was only recently ﬁnally conﬁrmed via genetics testing (16 years later!!). The journey along the way has taken us from Kingston Eye hospital to Guys & St Thomas, Great Ormond Street and Moorﬁelds hospitals.

The second part of my story started 3 year later when our second son was born – again the eye wobble but we knew that he had an identical condition (at least they both had playmates during the many hospital visits!!).

My story with the Nystagmus Network started with one of those long days at Kingston Eye hospital when we noticed a poster on the wall about the charity. We contacted them and shortly after attended the ﬁrst of many Open Days (this one in Birmingham) where we got to learn so much about the eye condition, meet some of the amazing people who support the charity and other people with nystagmus for the ﬁrst time.

The charity was a source of invaluable information including some life changing advice from the then education advocate Sam Jones. The journey continued with helping to raise money and attending more events. Then 6 years ago, I decided it was time to give something back so applied to become a trustee.

Our story will continue, both boys are currently studying exams (GCSEs and A-levels) and their journeys will take them which ever way they choose – they just need some extra support and consideration.

A picture of Sherifa wearing a white long sleeve shirt, baby blue trousers, black large framed glasses, black curly hair and black sandals. Standing on a bridge looking towards a flowing river.

Sherifa’s nystagmus story

Sherifa has shared her nystagmus story to help raise awareness of the condition and its impact this Nystagmus Awareness Day.

You can share your story here

This is Sherifa’s story …

I’ve had congenital nystagmus and Coloboma since birth, which presented its own unique challenges. Living with two eye conditions that I knew nothing about with no history of it in my family or in my genetics, was not easy and explaining it to others was even harder. My childhood was filled with ups and downs, twists and turns and that’s not just from the movement of my eyes!

Initially, I thought my eye conditions were quite common because I saw others wearing glasses. I assumed having an eye condition was “normal”. It was only when I started secondary school that I realised the reality of that wasn’t completely true, I attended a mainstream school where special equipment like magnifiers, large print books and touch typing were rare, and I was the only visually impaired person in my year group using these special adaptations making me stand out from everyone else. Not being able to focus for long periods of time would really get me down, it would take me three times as long to do the same task as someone who could do it in five minutes! Nevertheless, I embraced my quirks with humour, always ready with a joke or two. 😉

It was in Years 9-11 when my life trajectory began to shift. As my peers and I prepared for GCSEs I started thinking about what I wanted to study in college and how to tackle the challenges ahead. I ended up choosing a coursework only business course.

As a teenager, not being allowed to drive was another bump in the road I faced. Whilst my peers were passing their driving exams and excitedly buying new cars, I found myself struggling to come to terms with the fact that I’ll never be able to do the same. Although it was difficult to accept, I eventually came to understand that driving wasn’t the be all end all.

After successfully completing my college education, I went on to pursue a degree in Business Management. Although university was my first big challenge as an adult with tons of sleepless nights, anxiety and a few tears, I graduated with a Bachelor of Science degree with Honours. Following my passion for making a positive change in society, I have dedicated myself to a professional career as a Disability Access Consultant, where I advise organisations on how they can enhance their accessibility features, particularly for people with visual impairments.

My life journey has been filled with numerous obstacles, but my determination and resilience have always prevailed. I utilise my experiences to empower and encourage those who have faced similar challenges. As an adult my nystagmus has gotten a lot less noticeable and thanks to the expert treatment and support I receive at Moorfields Eye Hospital, I have learnt how to manage my nystagmus effectively and live a fulfilling life! I love my uniqueness and I wouldn’t change it for the world!

“With challenge, comes growth, wisdom and power!”

Vivien stands in front of a Nystagmus Network banner.

Vivien’s nystagmus story

For Nystagmus Awareness Day 2023 we’re giving you the opportunity to share your nystagmus story to help others understand the condition better.

You can share your story here

This is Vivien’s story …

My nystagmus journey began with the birth of our eldest son Sam in August 1983. At first, all was well but at three months old his eyes developed a wobble – and we were referred to a local eye consultant.

The consultant told us Sam had nystagmus – a condition of which we had never heard – and added that he had a “fifty per cent chance of normal school” (I subsequently discovered that was a meaningless statement – by the time Sam was born most children with nystagmus were going to mainstream school). I found it very hard to find out anything about the condition. These were pre-internet days – I felt isolated and alone.

It took a long time to find out that Sam’s diagnosis of nystagmus was only part of the story. As he developed, it became clear that he was acutely light sensitive – to the point that he could not see in daylight. We finally established when he was nearly two years old – at Moorfields – that he had a condition called cone dysfunction, meaning quite simply that the cones of his eyes did not work and explained why he was blind in sunlight. The consultant who told us this added that we had a one in four chance of our children having the condition. This came as another shock – until then we had been told that Sam’s eye condition was a one-off. We did go on to have another son, Max, who did not inherit the condition.

We travelled everywhere to find out more about our son’s eye condition. We went to Manchester University and to the London Refraction Hospital (LRH) – now the Institute of Optometry. It was as a result of a conversation at the LRH that what we now know as the Nystagmus Network was born. Ron Mallett and I agreed that a support group for people with nystagmus and their families would be a good thing and he sent me names and addresses from his patient list of people he thought might want to help. (With the advent of data protection, this wouldn’t happen today!) There was an enthusiastic response to my letter and it led to the first meeting of what was then called the Nystagmus Action Group in November 1984 at LRH. The Group was to go on to develop into the charity we know today.

Meanwhile, we were learning more and more about Sam’s eye condition. We transferred to Guy’s Hospital, where a consultant was taking a special interest in nystagmus. We agreed with him that Sam’s tinted black glasses with leather side-pieces, while effective, caused people to stare and were not a long-term solution. The consultant suggested tinted contact lenses, which he could top up with sunglasses, and special lenses were created by Guy’s for Sam. We were delighted – they improved his vision and Sam soon learned to put them in himself.

Sam did go to mainstream school – a primary school with a support unit for the visually impaired – and this special support continued at the secondary school he went to. He was able to go to university and got his first job working in Parliament. He stayed there for 15 years and now has a senior role at the Health Security Agency. To say we are proud of him is an understatement!