Living with nystagmus – Page 2

Listen to our BBC Radio 4 charity appeal

Actor, singer, musician and children’s author, Gerard McDermott presents a BBC Radio 4 charity appeal on behalf of the Nystagmus Network today. Visit our BBC webpage here to listen The … Continue reading Listen to our BBC Radio 4 charity appeal

Take part in research on disorientation

A team of researchers led by Dr Heiko Rust, based at the University of Basel Hospital in Switzerland, are inviting members of the UK nystagmus community to take part in … Continue reading Take part in research on disorientation

A mature woman interacts with a number of young children.

Our Facebook group for grandparents

When your child becomes a parent your relationship with them moves into an exciting new phase. Alongside that, you have an entirely new little person to get to know. It’s … Continue reading Our Facebook group for grandparents

Claire and her Father, Richard are smiling for the camera. Claire is wearing a mortarboard at her graduation.

Claire’s 1984 Story

On New Year’s Eve 1984 my parents went on their first date. And I guess that’s where my nystagmus story begins. My Dad had Nystagmus from birth but it wasn’t … Continue reading Claire’s 1984 Story

Trish is smiling for the camera and has long light coloured hair

Patricia’s Story

My name is Trish (Patricia). I was born in 1956. Nystagmus was virtually unknown back then. My parents struggled to keep me in mainstream school and I faced many challenges … Continue reading Patricia’s Story

Glen proudly standing in front of a running track wearing a medal. He is wearing sunglasses and a bright yellow jacket.

Glen’s Story

I was diagnosed with nystagmus almost from birth and I had glasses from around 18 months. I attended regular state school and struggled to see, however my parents were keen … Continue reading Glen’s Story

Flynn is smiling for the camera and is wearing glasses. He is standing in front of lots of greenery.

Flynn’s Story

This is Flynn. Flynn was diagnosed with congenital nystagmus at the age of 2. When Flynn was about 6 months old, our health visitor noticed something was not quite right. … Continue reading Flynn’s Story

Jan is smiling for the camera, wearing glasses, a pink blouse and a patterned scarf

Jan’s 1984 Story

I grew up knowing I was short-sighted but, other than that, I had a pretty normal childhood in a family with five brothers and two sisters. In school, I sat at the … Continue reading Jan’s 1984 Story

Marsha wears a floral top and a denim jacket. She is standing in a garden by a hedge.

Marsha’s message for Nystagmus Awareness Day 2024

Thank you to Marsha de Cordova for taking a few moments out of her busy schedule to celebrate with us Nystagmus Awareness Day 2024 in our Ruby Year. Watch Marsha’s … Continue reading Marsha’s message for Nystagmus Awareness Day 2024

Drew is wearing glasses and is smiling for the camera holding a steering wheel. In the background there is a rally car.

Drew’s Story

My name is Drew. Some may know me as DrewpyDesigns. I was born with albinism and nystagmus, but that’s not my full story. I’m a three-time TTT champion, self-employed as … Continue reading Drew’s Story