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 NN. 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.

Mike and his nephew, both wearing WWE T-shirts, fist bump for the camera.

Mike’s Southampton family send off

As Mike takes on his latest Walk for Wiggly Eyes 4 challenge in Croatia, his Mum, Karen, tells us about an amazing party she hosted for Mike, his family and friends at home in Southampton.

“Mike of Walk for Wiggly Eyes (W4WE) had a week’s stop at home before he started the challenging 1400 mile walk along the Croatian Long Distance Trail (CLDT).  This presented a great opportunity for friends and family to have a get together for a fun(d) raising party. Thanks to the generosity of everyone and the fantastic gifts that were given as prizes for the raffle, over £900 was raised to share between the Nystagmus Network and Gift Of Sight.

‘Mike has congenital nystagmus and consequently his vision is impaired however his inspiration for this walk is his nephew Archie (pictured with Mike) who also was born with nystagmus. Mike’s goal via his W4WE fundraising is to continue to raise awareness of nystagmus and donations to fund ongoing research to improve the sight of those living with nystagmus and other eyesight conditions.

‘Mike is now on the CLDT trail and he is going to have to tackle many obstacles along the way. You can follow his journey via https://www.walkforwigglyeyes.com/ and if you would like to donate to help Mike reach his target please click on the link  https://www.justgiving.com/page/walk-for-wiggly-eyes-nystagmus-network4″

Thank you Karen and thank you to everyone who gave so generously at the party.

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 postcard for the big nystagmus meet up in London on 13 July, featuring an image of Maria Theodorou, a clinician at Moorfields.

Booking is now open for our London event

Our next big nystagmus meet up takes place in London on Saturday 13 July, from 11am to 4pm.

This is your chance to hear all the latest nystagmus news, learn how to live well with nystagmus, meet nystagmus doctors and people living with nystagmus, just like you.

Tickets are available now through Eventbrite at £12 per person, to cover the cost of lunch and a raffle ticket. Under 5’s are FREE, but please note that we are unable to provide creche facilities at this event.

We look forward to seeing you in London.

Book for the London event on Eventbrite here

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.

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.

Sue speaking at a Nystagmus Big Meet Up.

Sue’s 1984 Story

In 1984 I had never heard of nystagmus and had no connection with the condition at all. 

It was for me a very momentous year, though, because it was the year I met the man who was to become my husband. 

We were both studying Travel and Tourism and became firm friends, helping each other prepare for our British Airways fares and ticketing qualifications.

We married in 1987 and then in 1991 heard the word nystagmus for the very first time when our second child was born, our daughter.

Soon afterwards we were introduced to the Nystagmus Network and have stayed connected with the charity ever since. After serving as a volunteer Parent Adviser and Trustee I became a member of the staff team in 2015.

You can watch a short video here about the story of my daughter’s diagnosis, my very first encounter with the Nystagmus Network and what happened after that. 

Two young children in party clothes stand beside a frosted cake.

Onyeka’s 1984 Story

This is a photo of my elder brother (Tony) and me at my first birthday celebration in Nigeria. Report has it that he desperately tried to steal the show but I didn’t let him.🙂Can you spot my dad’s analogue radio? Growing up, I never heard the word nystagmus, although I had a few friends with albinism. I only became aware of nystagmus, in the early 2000s, while studying Optometry at the University of Benin.