Month: July 2022

Child with albinism.

The impact of glare on reading

Researchers are investigating the impact of glare on young children with albinism and nystagmus to help ease important day-to-day tasks like reading.

Jointly funded by Nystagmus Network and Fight for Sight, a team of researchers at the University of Leicester will be investigating glare in patients with infantile nystagmus.  

People with nystagmus often experience glare, but this has not been researched thoroughly despite the discomfort it can cause and the impact it has on reading.  

Led by Dr Frank Proudlock, the study will measure the effect of glare by testing reading overlays, tinted contact lenses and other means.

Although there are several devices that doctors use to measure glare in eye clinics, few of them have been tested as to how well they measure glare in nystagmus. Also, it is very difficult to measure glare in young children.

The team at University of Leicester will study four groups of people: people with albinism; people with idiopathic infantile nystagmus; people with achromatopsia; and people without nystagmus.

The team hopes the study will help doctors to make reliable measurement of glare in people with infantile nystagmus, especially in young children.

Understanding how glare can affect reading in people with infantile nystagmus and ways of managing it will help provide useful information to parents, teachers, doctors and patients to come up with the best solutions for reading at home, work and at school or university.

Keith Valentine, Fight for Sight CEO said:

“We’re pleased to continue our important partnership with the Nystagmus Network, funding these vital projects. With one person in every 1,500 people having nystagmus, it’s vital that we fund research that can help improve lives and make sure children and adults with nystagmus live their lives to the fullest.”

Donate to the Nystagmus Network research fund here

University College London logo

What shapes quality of life of visually impaired children and young people?

Guest post by Ana Semrov, PhD student and study researcher, Vision and Eyes research team at UCL

Childhood visual impairment can have a significant impact on a person across their whole life, affecting their social and educational outcomes, career prospects and quality of life. However, how individual children and their families adapt to living with a visual disability is very variable. 

We aim to find out what helps children and young people with visual impairment and their families adjust to living with impaired eyesight and helps them have a good quality of life. We hope this will help us to develop and improve care and support for families of children and young people with visual impairment. 

To do this, we are inviting children and young people with visual impairment and their families to take part in our study. Taking part in this study would involve both the child/young person with visual impairment and at least one of their parents/carers completing some questionnaires about topics like general health, well-being, and relationships with others.

If you would like to participate, please fill in a few questions that will tells us a bit about you to help us make sure this study is right for you. To answer these questions, please go to https://redcap.idhs.ucl.ac.uk/surveys/?s=9FNN88TLENTKY4YE.

This research is funded by Fight for Sight and Ulverscroft Foundation, awarded to Professor Jugnoo Rahi.

A group of researchers.

Perceptions of nystagmus and the impact of the Covid-19 pandemic

Impact of the COVID-19 pandemic on individuals with nystagmus
and an exploration of public assumptions about the condition: an electronic questionnaire study

The study explored the self-reported impact of the COVID-19 pandemic on those with nystagmus, and examined both public understanding of how nystagmus affects people who have it and the perceptions of public understanding by those with the condition and their carers.

In conclusion, the study highlights the lack of public awareness of nystagmus and suggests opportunities to increase awareness without the need for extensive knowledge of the condition. The COVID-19 pandemic has posed additional difficulties for those living with nystagmus, which is likely to be comparable among those with similar ocular disorders.

Jay Self, a member of the team behind the survey, says: “Perhaps the most important message is that people who even loosely know someone with nystagmus or even those who have heard of it, tend to have a much greater understanding of the problems faced by those with nystagmus meaning that perhaps very soft things (like Richard Osman talking about it on the radio, for example) could be done to improve public awareness and appreciation without the need for the whole populous to have been to a seminar on it.”

Sue Ricketts from the Nystagmus Network, also involved in the survey, says: “It just goes to show that raising awareness of nystagmus, such as by marking Nystagmus Awareness Day each year, really does have an impact on the lives of people living with this condition.”

Read the full research article online here

Thank you to those members of the nystagmus community who took part in the survey and shared it with their wider circles.