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.
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.
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!
RNIB and BlindAmbition present a 16-week series of free weekly webinars to support visually impaired job seekers achieve the next stage in their career: finding a new role, entering employment, starting an apprenticeship, or starting up a new business. The webinars will cover a range of topics from CV writing, different ways to market yourself and interview tips. There are 16 sessions in all. You can join any or all of them. Details of the first 3 below:
Where I’ve come from, where I am and where I am going. The importance of goal setting, why we need it, how to set SMART objectives, determine your objectives, are you on track?
We know you will enjoy reading about Carol’s experiences. She thinks of her nystagmus as a quirky trait that doesn’t define who she is and hopes you will find her story encouraging.
I have spent 60+ years thinking this was just a funny and rather unique aspect of being me.
Carol, aged three
I was born in early 1959. My Mother, younger brother and I lived with my Grandparents in Glasgow.
Hold your head straight! Around the age of 7, we got a black and white TV. I would sit on a wooden stool in front of it and get told off for being too close and to “hold your head straight” when looking at the screen. I was unaware that I looked at everything from an angle – holding my head about 45 degrees to the right of my target and with a distinct tilt to my head.
My Mother took me to an Optician who prescribed glasses with a patch over one eye, to correct my “lazy eye”. I was constantly having my head straightened, which put everything out of focus, or made me see double.
At school, I sat in the front row but would often have difficulty reading the blackboard. Arithmetic and Maths were the most awkward as the printed squares in the school jotters were blurred. Neatly entering numbers in those squares required a tilt of the head that had me looking sideways and focusing out of the extreme corner of my left eye.
Glasses didn’t help Teachers, family and the Optician finally agreed the glasses were not solving the problem and, around the age of 10, I was referred to an Ophthalmologist at the general hospital.
The tests involved looking into a strange tunnel-like contraption with moving figures and shapes that I had to line up. Sometimes I couldn’t even see the shapes, because my head was held straight in the machine. They put drops in my eyes that blurred my vision completely for several hours. Despite this I was sent back to school right after the appointment, having been told very little about what was going on, either by my Mother or the Doctor.
Hearing the word Nystagmus for the first time After some time, we had an appointment with the Doctor and I heard the term Nystagmus for the first time. Apparently, it was genetic, although no one else in the family seemed to have the “condition”. The friendly Doctor told me I had “wobbly eyes” and in future, boys would find it very attractive! It would not get better, it might get worse and there was nothing to be done about it.
Can you re-train your brain? At last the glasses were consigned to the bin! I was told to try to look straight ahead and re-train my brain. Little was known about it so, other than people asking me to look straight at them so they could see my eyes dance for their amusement, I just got on with life.
Why are you looking over my shoulder? I left school after Highers, trained and worked as a computer programmer. Back then, code was handwritten – those pesky square boxes again! My way of looking at things was quite natural to me, even if it looked off to others. People who did not know me would ask why I was looking over their shoulder during conversation, or they would turn around to see who else I was looking at! I adjusted my stance so that it was my body that was at an angle to the other person, allowing my tilted head to face them. These adaptations evolved over time and somewhat unconsciously.
From programming, I moved into business management and eventually became CEO of country operations in a major oil and gas company. I took early retirement and sailed around the world with my husband in a 42-foot yacht, navigating from paper charts and small screen electronics. I now work in research in a University.
Many challenges There have been many challenges beyond the boxes on forms. My peripheral vision is blurred. This affects my confidence when driving and lights at night are scary. Combined with rain, I change my travel plans. Going down stairs and escalators requires some concentration to know where the edge of a step is. That said, I have climbed many mountains (literally) and I hold handrails or walls to maintain balance and perspective.
Entering a digital world As the world went digital, I angled my screen rather than my head. Phone texting only became possible with smartphones and the option of enlarging the display characters. Filling in printed forms and signing within a lined box remain frustrating to this day. To read a long array of numbers, such as telephone or IBAN, I have to move my finger over the preceding numbers to the next in line, in order to see each digit clearly.
My general eyesight has deteriorated and I now wear glasses. I can’t have contact lenses due to the wobble and apparently this means no form of laser surgery is possible. Small frames crowd my vision, so my choice in style of glasses is limited. Varifocals have been even more challenging and I have had to relearn my head angles and speed of movement in order to refocus.
I don’t see nystagmus as a disability I have spent 60+ years thinking this was just a funny and rather unique aspect of being me. Perhaps because I have lived out of the UK since 1988, I have only recently become aware of the Nystagmus Network and the extent of the membership. It has made me reflect on and be more conscious of my experience and adaptations. Having had no comparison or reference, I did not consider my condition an impairment or disability. No one ever told me I could not do something because of it. I wonder if my own and society’s lack of awareness during these past years meant I was not hindered in achieving my goals regardless?
Sadly, my Mother is registered blind as a result of macular degeneration. My Stepmother leads a fundraising team for Guide Dogs. Visual impairment is ever closer to home; yet I still did not consider nystagmus in this context until I started following the Network this year.
Carol, as an adult
Live life to the fullest I welcome the new knowledge and insights the Network is providing, along with support to those with the condition. In reading many of the stories and comments shared, I recognise the limitations and pressures experienced in these current times. I would encourage everyone, especially the youngsters, to understand their specific personal challenges, find appropriate support, consider the necessary adaptations as enablers and live life to the fullest.
Thank you, Carol, for sharing your story with us
If you would like to share your nystagmus story, please email us at [email protected]
Having nystagmus hasn’t stopped Leicester’s Khalil Musani from forging a career in optics and helping others look after their eyes
When Khalil secured a Saturday job at a Leicester opticians in 2017 it proved to be the catalyst to fulfilling his ambition to work in optometry.
Now, aged 21, and assistant manager at Specsavers Leicester, Khalil wants to raise awareness of nystagmus, the condition he has lived with for most of his life, alongside building a career in optics.
On Nystagmus Awareness Day 2022, Khalil and his entire staff team donned Nystagmus Network T-shirts and wristbands to raise awareness of nystagmus and support the work of the charity.
For his tremendous support, raising awareness of nystagmus and to honour his career success, the Nystagmus Network has nominated Khalil one of the ‘nystagmus champions’ of 2022. Join us to celebrate Khalil and all the nystagmus champions of 2022 at Open Day.
Khalil’s inspiring story has been told in local press articles in print and online.
Researchers are investigating the impact of glare on young children with albinism and nystagmus to help ease important day-to-day tasks like reading.
Jointly funded by Nystagmus Network and Fight for Sight, a team of researchers at the University of Leicester will be investigating glare in patients with infantile nystagmus.
People with nystagmus often experience glare, but this has not been researched thoroughly despite the discomfort it can cause and the impact it has on reading.
Led by Dr Frank Proudlock, the study will measure the effect of glare by testing reading overlays, tinted contact lenses and other means.
Although there are several devices that doctors use to measure glare in eye clinics, few of them have been tested as to how well they measure glare in nystagmus. Also, it is very difficult to measure glare in young children.
The team at University of Leicester will study four groups of people: people with albinism; people with idiopathic infantile nystagmus; people with achromatopsia; and people without nystagmus.
The team hopes the study will help doctors to make reliable measurement of glare in people with infantile nystagmus, especially in young children.
Understanding how glare can affect reading in people with infantile nystagmus and ways of managing it will help provide useful information to parents, teachers, doctors and patients to come up with the best solutions for reading at home, work and at school or university.
Keith Valentine, Fight for Sight CEO said:
“We’re pleased to continue our important partnership with the Nystagmus Network, funding these vital projects. With one person in every 1,500 people having nystagmus, it’s vital that we fund research that can help improve lives and make sure children and adults with nystagmus live their lives to the fullest.”
Impact of the COVID-19 pandemic on individuals with nystagmus and an exploration of public assumptions about the condition: an electronic questionnaire study
The study explored the self-reported impact of the COVID-19 pandemic on those with nystagmus, and examined both public understanding of how nystagmus affects people who have it and the perceptions of public understanding by those with the condition and their carers.
In conclusion, the study highlights the lack of public awareness of nystagmus and suggests opportunities to increase awareness without the need for extensive knowledge of the condition. The COVID-19 pandemic has posed additional difficulties for those living with nystagmus, which is likely to be comparable among those with similar ocular disorders.
Jay Self, a member of the team behind the survey, says: “Perhaps the most important message is that people who even loosely know someone with nystagmus or even those who have heard of it, tend to have a much greater understanding of the problems faced by those with nystagmus meaning that perhaps very soft things (like Richard Osman talking about it on the radio, for example) could be done to improve public awareness and appreciation without the need for the whole populous to have been to a seminar on it.”
Sue Ricketts from the Nystagmus Network, also involved in the survey, says: “It just goes to show that raising awareness of nystagmus, such as by marking Nystagmus Awareness Day each year, really does have an impact on the lives of people living with this condition.”
