Does nystagmus or ocular albinism affect my immunity?


Lots of you are asking us this question and some of you have received notification letters from the government. We asked for expert clinical advice and received the following statement: “IN (infantile nystagmus) or OA (ocular albinism) in isolation are not associated with compromised immunity. “There are some syndromic forms of albinism that are associated … Continue reading Does nystagmus or ocular albinism affect my immunity?

A round up of online learning


The Nystagmus Network has put together a handy list of tried and tested online learning resources for parents and carers. It’s a list that’s growing day by day. If you’d like to recommend a resource, please contact us and we’ll be happy to add it to our list. A brilliant ‘how to’ guide for parents … Continue reading A round up of online learning

Parents of adolescents with nystagmus: research participation opportunity


Ifigeneia Manitsa BEd, MSc, AFHEA (pictured) is a Psychology Researcher at Kingston University London. Her research is about the social and academic inclusion of adolescents with and without visual impairments.  Ifigeneia has a Degree in Primary Education and a Masters in Special Education. Visual impairment has been her field of expertise for the past 7 years. Her latest … Continue reading Parents of adolescents with nystagmus: research participation opportunity

Julia’s musical adventures


A guest post. A couple of years ago, I wrote a piece about being a parent with nystagmus of a child without. That child is now old enough to tell me if an approaching bus is a three-and-a-four-and-a-one or a two-and-a-nine, and I consider myself to be winning at life. My second child appears to … Continue reading Julia’s musical adventures

Our new Facebook groups


The Nystagmus Network has launched 3 brand new official Facebook groups this week to help members of the nystagmus community come together to share their experiences, their problems and their successes and offer each other help and encouragement when it’s needed. All three groups have Nystagmus Network staff members Sue, Sara and Debbie as admins … Continue reading Our new Facebook groups

Nystagmus researchers need your help


Common misconceptions about nystagmus A team of nystagmus researchers in the UK have recently shown that there is significant variation in the way people with nystagmus are supported and given information, from diagnosis to treatments and beyond. They are now interested in studying public perceptions of nystagmus and are developing a similar questionnaire for both … Continue reading Nystagmus researchers need your help

Fight for Sight survey on eye conditions and sight loss


Fight for Sight needs your help as part of a ground-breaking survey into the experience of living with sight loss or an eye condition. By taking part in the survey you will be helping Fight for Sight to put sight loss on the map and help increase the amount of money going into eye research. … Continue reading Fight for Sight survey on eye conditions and sight loss

Are you going to LookFest 2020?


LookFest is an accessible family festival outdoors and under canvas for families where there are children and young people with impaired vision.After the huge success of LookFest 19, they’re doing it all over again in July 2020. Join them in the beautiful Herefordshire countryside for a fun-filled weekend with the #LookFamily See the highlights of last … Continue reading Are you going to LookFest 2020?

Reading an optician’s prescription


Although glasses cannot stop nystagmus they can correct refractive errors, such as long or short sight and astigmatism, to make the sight as clear as it can be. Do you understand what all the numbers and words actually mean on your prescription? Specsavers have made a handy video explaining everything. Watch here to find out … Continue reading Reading an optician’s prescription

Into employment with VI


Latest study shows improvements for young people with vision impairment entering employment but more needs to be done The latest results of a Longitudinal Transition Study published by the Vision Impairment Centre for Teaching and Research (VICTAR) at the University of Birmingham and Thomas Pocklington Trust show an increase to those entering employment but inconsistencies of … Continue reading Into employment with VI