Category: Living with nystagmus

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.

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. 

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!

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.

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.  

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. 

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!”