nystagmus awareness – Nystagmus Network

Nystagmus is … a guide for adults

A fabulous new publication, Nystagmus is … a guide for adults, is now available FREE from our online shop. The booklet is inspired by the wonderful Roger (pictured), who first contacted us with the idea last Nystagmus Awareness Day. He began with the words: “I have enjoyed nystagmus for nearly 80 years” and went on to outline his suggestion of asking people who live with nystagmus to describe it for others.

The end result of that project is full of contributions from people who have nystagmus, describing how they feel about it and how it affects their lives. For the first time you can read what it’s like to have nystagmus by the people who really know.

When we shared an advance copy of Nystagmus is … with Roger, earlier this week, he said:

“It’s fabulous and should open up a whole new understanding of vision disability awareness and training. I am proud to have been part of it and proud that you took up the challenge of getting and sharing your members’ feedback.”

Download your copy of Nystagmus is … here

A YouGov nystagmus awareness survey

The Nystagmus Network commissioned a YouGov survey in May 2020, ahead of Nystagmus Awareness Day on 20 June, to see how aware the UK population is of nystagmus. The survey was free of charge, thanks to a competition, run by the Small Charities Coalition of which we are a member.

The headline results

82% of people have never heard of nystagmus

14% said a friend, acquaintance or family member has the condition

Misconceptions about nystagmus

Once we had explained what nystagmus was, we asked people in what other ways they thought nystagmus might affect a person apart from their eyesight. Alongside the usual suggestions of difficulties with reading and writing, employment, socialising and getting around, a startling 24% thought that people with nystagmus would also have learning difficulties.

One of the Nystagmus Network’s strongest messages is that, whilst nystagmus can affect access to learning, it definitely does not affect ability to learn.

It seems we still have some way to go in delivering this message.

Awareness improves quality of life

Finally, we asked what people thought would most help improve the quality of life of people living with nystagmus. The most popular suggestions were medical research, access to information and adapted technology, with 59% agreeing with us that greater awareness in the general population helps those living with the condition.

We are grateful to YouGov and the Small Charities Coalition for this opportunity to poll the UK population at large and pleased to report that all 250 of our respondents are now ‘nystagmus aware’.

Thank you, Lynda

Our lovely knitting volunteer, Lynda has just delivered a new supply of Nystagmus Network mascots for our online shop.

Each mascot represents a child who has nystagmus and wears a warm woolly hat and scarf against the stormy weather. Every mascot is individual, just like real children.

All profits from the sales of the mascots go directly to the Nystagmus Network and every mascot sold helps us raise awareness of the condition and gives a child (or an adult!) a woolly friend just like them.

You can order your mascot from our online shop, here.

Thank you, Lynda!