Category: Living with nystagmus

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 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.

Marlow Henry’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 Nystgamus Network!

 

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.”

 

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.

A stack of pancakses on a plate topped with butter, strawberries and blueberries.

Join us for a flipping fantastic celebration

Calling all pancake enthusiasts and creative cooks! It’s time to dust off your spatulas and put your culinary skills to the test because the Nystagmus Network is hosting an exciting Pancake Day Competition to celebrate our 40th Anniversary!

Get ready to sizzle, flip, and dazzle with your pancake creations as we invite you to participate in our themed pancake competition, The Great ‘nystagmus’ Pancake Off! We’re looking for pancakes that capture the spirit of our Ruby Year in the most delicious and imaginative ways possible!

 To enter:

  1. Whip up your most innovative pancake masterpiece inspired by our Ruby Year.
  2. Snap a photo of your pancake creation.
  3. Share your photo on social media using the hashtag #RubyPancake and tag @NystagmusNetwork or email it to us at [email protected]

Our esteemed trustees and members will be judging the entries based on creativity, presentation and adherence to the Ruby Year theme. The winners will receive fabulous prizes and, of course, bragging rights as pancake champions!

Whether you’re a seasoned pancake pro or a first-time flipper, everyone is welcome to participate.

Let’s make this Pancake Day one to remember as we celebrate 40 years of supporting people living with nystagmus. Together, let’s spread joy, creativity and deliciousness one pancake at a time!

#RubyPancake @NystagmusUK

A flyer for this research participation opportunity giving the same information as in the blog post and including a thumbnail image of Katherine.

Have a brain scan for research – recruiting now!

Aged 18-55?

Diagnosed with infantile nystagmus?

Within travelling distance of Cardiff?

Researchers at Cardiff University invite you to take part in an exciting research study looking into brain activity in infantile nystagmus

What does it involve?

  • A quick eye examination
  • Lie in an MRI scanner and look at moving shapes and patterns on a screen

Where and when will it be?

  • At Cardiff University
  • From now until May 2024

Who will run the session?

Katherine Ward, optometrist and PhD researcher at Cardiff University

Travel expenses

Travel expenses will be paid up to £50

For more information, please contact Katherine at [email protected]