Our Ruby Year – Nystagmus Network

Marsha chats with delegates at a Nystagmus Network event.

A Ruby Celebration at the House of Lords

Forty years ago this month a young mother sat at her kitchen table with a notepad and pen as her infant son slept. She’d just received the devastating news that … Continue reading A Ruby Celebration at the House of Lords

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

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

Taylan is wearing a smart suit with a striped tie. He is smiling for the camera and standing outside in an open space.

Taylan’s Story

My name is Taylan. I’m 8 years old and I’m nearly 9. My mummy was really worried when she found out I had nystagmus. I have lots of hobbies and … Continue reading Taylan’s Story

Angela is wearing glasses and is smiling for the camera. There is text embedded into the photo that says 'Happy Nystagmus Awareness Day We all have our own story'.

Angela’s Story

I am in my 50s and in my generation, there was little awareness or support for people with nystagmus or their parents. Growing up, I was always a clumsy child … Continue reading Angela’s Story

Vicky’s 1984 Story

My favourite subjects at secondary school in 1984 were hockey, music and maths. Fast forward 40 years and those subjects still dominate my life. Professionally I’m Finance Director for an … Continue reading Vicky’s 1984 Story