Harshal’s 1984 Story

The year was 1984 and in a little corner of Middlesex, a baby boy was just starting to explore the world, especially a local park that our family home shared a fence with that had an excellent playground.

My memories, of course, don’t stretch back that far, but I can only imagine the world through the lens of a one-year-old. Perhaps I was busy stacking colorful plastic cups, chasing after a brightly colored ball that rolled just out of reach, or maybe I was mesmerized by the flashing lights of a Fisher-Price or Tomy toy powered by those unwieldy D-cell batteries. Little did I know, the year I began cooing and babbling would also mark the birth of the Nystagmus Network, an organization that would play a vital role in my life years down the line.

Fast forward 40 years, multiple house-moves across multiple continents and I find myself today with my own family, in exactly the same little corner of Middlesex…with exactly the same park from 40 years ago around the corner! However, I’m now not the one sitting in the swings (most of the time), it is my kids who are being pushed by me, on what I like to think/hope are the same swings I sat on all those years ago.

Unlike my involvement with the local park 40 years on, my involvement with Nystagmus Network only marks 1/10th of the charity’s life. It has, however, undoubtedly made a lasting impact on me and my family. What started off as a silent direct debit 4 years ago, transformed into volunteering and then as a fully fledged trustee a year or so after. I would like to think that the charity will still be around in another 40 years and that I will continue to play my part in many of those years ahead. More so, I hope I pass my enthusiasm for nystagmus research, support and awareness raising to the next generation in those years ahead, who may also be in a position to look back over another 40 years, when that time comes around again!

Happy Ruby Anniversary Nystagmus Network!

 

 

John’s 1984 Story – The world is my chauffeur

We belong to many tribes, often overlapping, during our lives. The story of my nystagmus tribe starts in 1984. In particular, the day I first met others with nystagmus and parents, like Vivien, of children with nystagmus. It still ranks as one of the most important days in my life.

That summer evening opened a door into a new world. At last, I could ask questions about nystagmus and get answers. And, when none of us had the answers, we’d go looking for them. Crucially, together, we could even laugh about nystagmus. And agree that not being able to do things like drive, well that’s not the end of the world.

The community that began 40 years ago continues to provide answers to tens of thousands of people around the world. And the Nystagmus Network still helps to dry the tears and spread a little laughter.

Not surprisingly then, volunteering with and eventually working for the Nystagmus Network have been far more worthwhile than the years I spent as a financial journalist. And, even though I’m no scientist, the research side continues to fascinate me.

Forty years on I’m lucky to still be volunteering with other sight loss charities, as well as occasionally helping the Nystagmus Network. As part of our ruby celebration, I would like to recognise the contributions to this charity of some who are no longer with us, among them Bruce Green, Steve McKay, Andy Machin and Richard Wilson.

Because of nystagmus, like me, neither Steve nor Richard could drive. That didn’t stop us enjoying life – or even travelling. In our own ways, all three of us realised that the world is full of drivers. The world really is our chauffeur.

Photo: Kathryn Swanston as a student orthoptist in the Orthoptic Clinic at Moorfields Eye Hospital, High Holborn Branch c. 1984.

Kathryn’s 1984 story

In September 1984 I started my training as an orthoptist at Moorfields Eye Hospital School of Orthoptics.  Back then orthoptic training was a three-year diploma course for which students received a full bursary from the Department of Health.  In those days there were two branches of Moorfields Eye Hospital, the existing one in City Road and another in High Holborn on the corner of Dury Lane.  The Holborn branch, where I was based for the first part of my training, closed in 1988 and is now a hall of residence.  As students we gained experience and knowledge by seeing our own patients under supervision and by attending lectures from the ophthalmologists and orthoptic teachers at Moorfields.  The head orthoptists at Moorfields during my training were Barbara Lee and Kathleen Swale and the consultant ophthalmologists who specialised in ocular motility were Mr John Lee and Mr Peter Fells.   I remember learning about nystagmus and meeting some patients with nystagmus but not until my final year of training when nystagmus appeared on the curriculum.  I formed a close friendship with three others who started training that year. Although none of us are still practicing as orthoptists we are still in touch, the ‘Holborn Ladies’, and we are planning our own 40th year celebration in Holborn to mark the anniversary of our meeting in 1984.  It is so lovely to know now that as were beginning our training, the Nystagmus Network was being established.

A group of adults and children walking together along a gravel path in a park with large trees.

Walk with us

On 18 and 19 May we’re encouraging all our followers and supporters to get out for a walk. The weekend falls during Mental Health Awareness Week. Spending time outside with a friend or family member, or even simply enjoying some fresh air alone, is known to boost positivity and is good for both physical and mental health.

So, we’re inviting members of the nystagmus community to join us for a walk, in your local area, wherever you are. Whether you choose a park, the beach, a quiet corner of your city or a leafy lane, whether you go solo or invite others along, let us know where you’ll be walking to supercharge your health and wellbeing for the summer months ahead.

Record your nystagmus walk by emailing us at [email protected]

Sue, wearing her Nystagmus Network T-shirt, sits on the wall of a churchyard with her two Irish Setter dogs.     Sue will be walking with Ailbe and Bella.

Onyeka in a park near her home. She is wearing her Nystagmus Network T-shirt.     Onyeka will be walking in her local park.

A young boy wearing a green T-shirt, blue shorts, a sun hat and sunglasses sits in a tree.     Henry will be walking in the woods with his family.

Paul Rose headshot.

Paul’s Story

For those who may not know, I’ve lived with a hidden disability called torsional nystagmus since birth. This condition affects the way I see the world, sometimes making it blurry or shaky. You might think I’m looking at you in a funny way, but believe me it’s not you. It’s me!

If somebody is showing me something to read on their mobile phone or on their screen at work, it’s an extra challenge for me to focus and read. I get there, but it takes just a little bit of extra time.

Despite its challenges i’m so happy to finally (finally!) properly embrace my condition. Thankfully as I’ve had this forever, my brain does a lot of correction for me which is huge.

Others who acquire the condition during their life through injury or otherwise are not so lucky and their worlds are moving all of the time.

Joining the Nystagmus Network feels like an opportunity to not only deepen my own understanding of the condition but to support the one in 1000 people in the UK who have this condition.

Why Hidden Disabilities Matter:

The struggles big and small that we face are invisible to others, making it difficult to access support and understanding around what is one of many vision impairment conditions

That’s why the Nystagmus Network’s work is so crucial and together we can:

Raise awareness about nystagmus and other hidden disabilities.
Challenge misconceptions and break down barriers.
Advocate for inclusive workplaces and communities.
Support each other on our journeys.
I’m honored to be part of this mission and I’m eager to learn, contribute, and make a real difference.

That’s why the Nystagmus Network’s work is so crucial. They provide a vital platform for connection, information, and empowerment for people with nystagmus and their families.

A young woman with long, wavy 'red' hair smiles for the camera.

Marlow’s Story

I was born with nystagmus and multiple other eye conditions. I was put in gymnastics at an early age to help with coordination and balance. This led me into cheerleading and eventually earning a bronze medal and the cheerleading world championships in 2019. I also am a black belt in taekwondo. Sports have helped strengthen motor functions that are limited due to my vision.

Currently, I am a history teacher living in Las Vegas Nevada. Living in a city helps me get from one place to another because I cannot drive.

Although being legally blind affects my day to day life in negative ways, it also has changed my attitude and perspective on life. I am more patient and understanding with others because of my experiences with limited vision. My communication skills and determination have also been positively impacted by my disability.

Overall, the Nystagmus Network has been a great community to share triumphs and struggles with people who truly understand. Congratulations on 40 years of the Nystagmus Network!

 

A young child wearing a purple paper crown and glasses is cuddling a blue toy and smiling for the camera.

Ruby’s Story

When Ruby was 9 months old I noticed one of her eyes shaking, which prompted me to visit our local optician. They informed me that they didn’t treat children that young and we were advised to go to our local eye infirmary. From our visit to the eye infirmary everything is a blur, as we were taken from the eye infirmary to our local hospital and then to another hospital where we spent a few days. Words like cancer and tumours were thrown around as I think consultants and doctors were very worried that there could be something in her brain causing the eye wobble- which at this point had started in her other eye too. Luckily for us all of Ruby’s tests and mri scan came back clear and she was eventually diagnosed with spasmus nutans. Appointments were arranged for Ruby to be seen by ophthalmologists at our local eye infirmary and we were relieved that the ordeal was over. Fast forward to the ophthalmologist appointment and we were informed that Ruby’s eye wobble was called nystagmus and she needed glasses to correct her vision. We didn’t question anything, as a glasses wearer myself I thought that her vision was probably like mine and that the glasses would correct her vision and she could see fine. Turns out that was not the case, as at Ruby’s next ophthalmologist appointment we were asked if we’d like to register her as visually impaired. I think this came as a shock to me and her dad as up until this point we hadn’t questioned what nystagmus was or her ability to see. From that appointment came a lot of other appointments with geneticists and pediatricians. The genetic testing came back with only one fault in a gene, but luckily our geneticist got us on a pilot RNA testing scheme which eventually came back and confirmed that there are actually 2 faults in the CEP290 gene and that Ruby has Leber Congenital Amaurosis (LCA). Ruby’s peripheral vision and colour vision is affected by LCA, she has nystagmus and photophobia. The diagnosis and journey so far has been really tough, but being able to turn to charities like nystagmus network and guide dogs has been amazing for us. Looking through your website and social media has enabled us (Ruby’s parents) to see that a diagnosis of vision loss isn’t the end of the world and that Ruby will be able to live a fulfilling and happy life, just as anyone would want for their child.

Ruby has just turned 5 and started Reception in September 2023- which she is loving! Her favourite colour is purple. She loves the BBC tv show dog squad and can’t wait till she can get a guide dog as she thinks that they are amazing. She has a cane called “Poppy the Flower” which she often takes to school (although all of her friends always want a try so she doesn’t do it often). And even though she has many trips and bumps (nearly every day) she is determined to keep up with all of her friends and doesn’t let anything get in her way.

 

Peter’s 1984 Story

At 12 years old, I was preparing for my first summer Scout camp in Guernsey, which required a 10-hour ferry ride from Weymouth, marking my first time leaving mainland UK. Frankie Goes to Hollywood’s “Two Tribes” was topping the charts, with the music video playing on the ferry, alongside Cyndi Lauper’s “Time after Time”.

My home was in a village in Shropshire where my Dad still resides and I had yet to visit London. I recall sneaking money from my piggy bank with my twin brother to buy penny sweets from the Post Office before playing table tennis and football. Apparently, a pint of beer cost less than 80p, according to my Dad. Despite being an Aston Villa fan, I had to endure Liverpool winning the old First Division, as my brother was a Liverpool supporter. We also acquired our first personal computer, a ZX Spectrum and spent hours trying to pirate games loaded via an audio tape player.

The year was marked by the Ethiopian famine, with Band Aid’s “Do They Know It’s Christmas” released later in the year and I remember Michael Buerk’s news report on BBC News. Television was limited to four channels, with Channel 4 having launched two years prio, and VHS recorders were starting to become common. Grange Hill was a popular show tackling topical subjects for young viewers.

Outside, I spent a lot of time playing cricket, football, kerbie and riding bikes with friends in our neighbourhood, with Choppers and Grifters being the bikes to have. Little did I know, it would be another 21 years before I’d encounter the word “nystagmus” for the first time.

Cohen smiling for the camera, wearing glasses and a white polo shirt with a black striped collar

Cohen’s Story

 

“Cohen was diagnosed with congenital nystagmus when he was around 6 months old. He is now almost 10 years old. Cohen’s cousin was diagnosed with nystagmus a year or so before him. This gave us much reassurance that Cohen will be ok. We’ve been so lucky. Cohen has had the same visual impairment teacher since nursery. She makes sure all the right settings are in place for him in school and helped him be entitled to extra help outside of school. I’m forever grateful for his VI teacher. He has a lovely group of friends in school and every school report is about him growing in confidence which is so nice to hear. He enjoys football, Xbox, swimming. He constantly makes us proud and never lets his visual impairment hold him back.”