Tag: nystagmus network

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.

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.  

A close up of someone wearing eye test glasses and the words 'Funding visual impairment a landscape view'.

A new report highlights the need for more investment in sight research

Nystagmus Network’s Sue is proud to have played a small part in the work behind a new report, published by NPC today, into the lack of funding for visual impairment.

The key headlines of the report:

Our message 

  • Funders should give more money to medical research and systemic change to achieve greater long term impact for people living with sight loss. 
  • Eyesight is the sense people fear losing the most. Many consider it to be unpreventable, untreatable, even inevitable, meaning treatment is often sought too late. By giving more to medical research and working towards societal and policy change, funders could achieve greater long term impact for people living with sight loss. 

Philanthropy context 

  • At present, most money goes to services which improve quality of life – just 3% goes to research. These services are vitally important, but we shouldn’t neglect medical research and working towards systemic change – especially early stage research and areas where there is little profit incentive for pharmaceutical companies. 
  • Most charitable funding for visual impairment comes from legacies, fundraising appeals, subscriptions, government contracts, and the Lottery. It does not seem to be a popular cause among trusts, foundations, or philanthropists, with very few dedicated funding streams. More philanthropic funding therefore has the potential to make a huge difference in this sector. 
  • Giving more to medical research and systemic change needn’t be at the expense of frontline services. The visual impairment charity sector is small compared with other health sectors. The combined income of its top 16 charities is less than that of the single biggest cancer charity. There’s plenty of room for growth. 
  • We’ve published this review of the visual impairment sector to help funders better target their giving. For any issue you need a healthy balance between reactive and preventative work. There is a trade-off between having a relatively certain impact on a small number of people in the short term and having a much less certain impact on a huge number of beneficiaries (at the medical, society, or policy level) in the long term. 

Policy context 

  • The overall visual impairment sector in the UK is complex, overlapping with different aspects of the healthcare system, social care, and many other sectors – and there is no national strategy for eyecare.  

Facts about visual impairment 

  • More than two million people in Britain live with sight loss severe enough to significantly impact daily life, with the number expected to double by 2050. Of this, around 340,000 are registered blind or partially sighted. The leading causes are age-related macular degeneration (48%), glaucoma (16%), cataract (12%), retinitis pigmentosa (10%), and diabetic eye disease (8%). 

About this research 

  • This research covers six areas where philanthropic funding could make a difference: children and young people, working-age adults, older people, mental health and isolation, disabilities and learning difficulties, and medical research. It examines what the NHS and local government are already doing, and where philanthropy can add value. 

Download the full report here

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 Greenwood

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!

The view of a woman's face from above. Someone's hands are applying eye makeup to the seated woman.

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.”