Peter smiles for the camera. He is wearing a purple shirt.

Peter’s nystagmus story

Peter’s nystagmus story comes in the form of a poem.

Thank you for sharing, Peter

And the boy inside me still cries

Something is wrong with my eyes.

At birth the angels left a rare mark, 

and the boy inside me still cries.

My parents searched for whys.

Is he blind? Will his world be dark?

Something is wrong with my eyes.

There’s no cure, the doctors advise,

his life will follow a difficult arc,

and the boy inside me still cries.

Bullied and bruised, I wore a disguise,

to shield me from stares and remarks.

Something is wrong with my eyes.

I found ways to cope and improvise,

quelling the urge to end my life’s walk,

and the boy inside me still cries.

It’s been six decades now. I seldom sigh.  

What I can do is my trademark.

Something is wrong with my eyes,

and the boy inside me still cries.

Mason is sitting on the floor of a sports hall holding a water bottle.

Mason’s nystagmus story

For Nystagmus Awareness Day 2023 we invited members of the nystagmus community to share their story to help people in the wider population to understand the condition.

Thank you to everyone who shared their story with us.

You can read all our nystagmus stories here

This is Mason’s story …

We first noticed Mason’s eye movement when he was around 8-10 weeks old. His eyes would jerk to the right. My elder brother also has quite severe nystagmus so instantly my gut instinct told me it was nystagmus, however I just never considered that my children would have it as I don’t have it myself, although my mum has very mild nystagmus. As Mason was born at 35 weeks and had some trauma surrounding his brain, we already had an extra eye and hearing test booked in. This meant we were fast tracked for an appointment which we were extremely grateful for! The Ophthalmologist clinically confirmed it – congenital jerk nystagmus. 

The first year of his life left us in constant worry about how he’d struggle to meet milestones. Would he be a late walker? Would he be able to drive when he’s older? However, as time has gone by, he’s really shown us just how determined he is to not let his eyes stop him from doing everything he wants. He began to walk around 15 months and now at the age of 2 he doesn’t stop running! His confidence can sometimes be a bit knocked down when exploring new, big places with a lot to take in, but generally he is fine once shown around and how to access what’s around him. 

We see a Visually Impaired teacher on a regular basis who will support him in nursery and school. She is just amazed at how able he is. His eyesight is incredible and he often spots things before I do! He does have a very mild prescription for glasses, but being the crazy active toddler he is, he won’t wear them and is more than happy to go without at his own choice. 

He loves kicking a ball about, loves playing with his cars, loves being outdoors and loves spending time with family. 

Personally, I don’t know what life with nystagmus is like, but I do know that with the right mindset and determination it can’t stop you from doing what you love. Everyday my little boy makes me so incredibly proud; his achievements motivate me to be the best I can too. 

Gemma smiles for the camera. She has long, very fair hair and wears a dark top and necklace.

Gemma’s nystagmus story

To help raise awareness and understanding of nystagmus, we;re sharing all your stories this Nystagmus Awareness Day.

You can share your story here

This is Gemma’s story …

My name is Gemma and I am 38 years old. I have congenital nystagmus. I have 3 children whose vision is perfect so I know I haven’t passed it down to them. 

When I was younger nystagmus wasn’t well known and I spent a lot of my childhood visiting the opticians, going to the eye hospital and being given glasses for short sightedness which made no difference. I held everything close up to see and managed school by copying off the child next to me. My hair was white and I have a very pale complexion so I think doctors thought my vision was likely to be down to albinism. I was told as my hair got darker as I got older my eyes would get better … it did not. 

After starting secondary school I had to ask the teacher to read off the board what they were writing so a lot of my school work was done by memorising what they said. Every subject I took further were all practical subjects so art, drama, dance. I went to university and completed a theatre and performance degree. 

I always knew I wouldn’t be able to drive so it’s never really bothered me. I’ve always got by one way or another. 

At the age of 17 I was diagnosed with nystagmus and was classed as partially sighted. At the age of 30 I was then classed as severely sight impaired/blind.

I worked in schools as a learning mentor and a teaching assistant and went on to complete my PGCE to teach. Teaching wasn’t for me and I went on to secure a job as Quality of Education Manager and SENDCo for a large day nursery. I absolutely love my job.

I have always had barrels of confidence and take pride in how much I have achieved despite my visual impairment. There’s a solution to every problem. 

Claudia wears a white top, glasses and a floral crown.

Claudia’s nystagmus story

Thank you to everyone sharing their stories with us for Nystagmus Awareness Day 2023.

You can share your story here

This is Claudia’s story …

Ours isn’t a complete journey, far from it. In fact, it’s just the beginning. Claudia is 6.

Claudia was diagnosed at 9 months old.

I’d noticed the flicker in her eyes.

Is this developmental? I’m not sure I remember her brother having the same issue, but it was a long time ago (4 1/2 years between them). Will it pass? She’s a happy, healthy baby …

The (very concerned) GP, who’d never seen anything like it, referred us to the non-emergency, urgent clinic at our local hospital.

Cue tests, more tests, fasting, sedation and MRI scans. A very long few days of constant worry.

Diagnosis: congenital nystagmus.

Prognosis: a non-degenerative condition. Unlikely to drive a car or catch a ball.

I don’t diminish their pragmatism. These outcomes are likely (most definite) in Claudia’s case. However, her vision is her only boundary. Apart from not being able to see very well, Claudia is wilful, stubborn, contrary, assertive, wise, articulate, bright, funny, sassy, endearing and beautiful – no different to any other child her age.

She has taught me to be patient, tolerant (not always easy when you’re being back chatted and outsmarted by a 6 year old!), inclusive and mindful of others. And has opened up an entire new way to see the world and its endless possibilities.

In time, we have also learned that Claudia is severely colour blind (she sees black, white and red for sure, the other colours kind of merge together – but she can determine between lighter and darker shades) and photophobic (she wears react-to-light glasses and an array of peaked caps and visors throughout the year).

There may be other issues that arise in the future, but we are closely monitored and very well looked after by the brilliant team at Royal Derby Hospital. We await genetic testing, too.

The remainder of Claudia’s senses, however, are on high alert. Her (somewhat selective!) hearing is refined. She hears music through her whole being. She dances like everyone is watching. Her grasp of language is beautiful and her interpretation of the world leaves me stunned and floored, regularly.

This girl endears anyone and everyone to her that crosses her path. And I know, she will move mountains.

Go get ‘em, girl. The world is yours.

Ella wears a pink dress and stands with someone wearing a large character costume.

Ella’s nystagmus story

We are delighted to share your stories of living with nystagmus to help raise awareness.

You can share your story here

This is Ella’s story …

Ella was first diagnosed with nystagmus at 3 months old. A routine check-up at the doctor’s turned into something completely different. The doctor told us she had nystagmus (this is caused by Oculocutaneous Albinism) but didn’t elaborate any further other than to say she would be referred to the eye hospital and she might not be able to see very well. As new parents this was frightening and very upsetting. We did have lots of support from the hospital and the Nystagmus Network who have been amazing. The helpline has made all the difference. Talking to someone who understands our feelings and just to listen to us.

Ella is now 4 years old and will be starting school in September. She is amazing beyond words. She participated last year in a dance show in front of a large audience, takes dance and swimming classes regularly, loves going on her scooter everywhere and she does not let anything hold her back. Her 8-month-old sister was also diagnosed recently and Ella said to us: “Well me and Lola will be able to talk to each other about it and support each other”.

Very proud parents. 

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.

You can share your story here

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 smiles for the camera.

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 Kubavat headshot

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.