Living with nystagmus – Page 4

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 … Continue reading Ruby’s 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. … Continue reading Peter’s 1984 Story

Ava holds her 'player of the week' certificate for the camera.

Ava

Ava was born with congenital nystagmus. She loves rugby and swimming. She’s full of life and lets nothing get in her way.

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 … Continue reading Cohen’s Story

Sue weas a pink polo shirt and carries a beach bag, sunglasses and her shoes. She is on a beach.

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 … Continue reading Sue’s 1984 Story

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 … Continue reading Onyeka’s 1984 Story

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 … Continue reading Join us for a flipping fantastic celebration

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 … Continue reading Have a brain scan for research – recruiting now!

The banner of the Great Winter Get Together as inspired by Jo Cox featuring bunting.

The Great Winter ‘nystagmus’ Get Together

Let’s banish the winter blues! Please add 7pm on Thursday 11 January to your calendar and join us for the Great Winter ‘nystagmus’ Get Together, inspired by the Jo Cox Foundation, where we … Continue reading The Great Winter ‘nystagmus’ Get Together

A desk with an open laptop, plant and coffee cup.

Understanding your experiences of nystagmus

You are invited to participate in a research study titled “Understanding the Experiences of Individuals with Eye Movement Disorders.” This study aims to explore the lived experiences, challenges, and perspectives … Continue reading Understanding your experiences of nystagmus