Surrey charity founder wants better recognition for eye condition

Vivien Jones wants more awareness of nystagmus - where involuntary eye movement can impact vision

Published 12th Jan 2025
Last updated 12th Jan 2025

The founder of a charity that supports people with an eye condition says she wants it to be better known.

Vivien Jones started the Nystagmus Network, which helps people and funds research into nystagmus.

It's a condition where people have involuntary eye movement which can often impact their vision.

Vivien Jones, who's from Lingfield, is the honorary president of the network.

She told us more about the condition.

"You're visually impaired, basically. The most common complaint of people with nystagmus is they can't drive a car.

"It's like being acutely short-sighted without being able to cure it."

Vivien said lots of people she speaks to are unfamiliar with the condition.

"The word 'nystagmus', most people go 'what is that strange word?' And we're battling to get it better known.

"It's not that uncommon: it's one per thousand of the population so we feel it ought to be better known."

Vivien has also been recognised for her work in this year's honours list with an MBE.

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