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’.