Nystagmus – Information and Support
Nystagmus affects people in varying degrees and finding effective help and support is essential to managing symptoms and improving well-being.
Whether your child is newly diagnosed or has been living with Nystagmus for a long time, understanding your options will help you find information and support and enhance their quality of life.
What is nystagmus?
Nystagmus is defined by involuntary eye movement – the eyes can move in any direction including rotary, horizontally and vertically – most commonly side to side. It can effect one or both eyes simultaneously and a person with nystagmus has no control over this rapid movement of the eyes.
Diagnosing nystagmus
Jay Self, Clinical Adviser with the Nystagmus Network, talks through the process of diagnosis for Congenital Nystagmus in the UK.
Jay Self, BM FRCOphth PhD Associate Professor Consultant Ophthalmologist Undergraduate Ophthalmology lead (UoS) Deputy MSc Genomics lead (UoS) University of Southampton/Southampton General Hospital (Eye Unit).
The causes of nystagmus
People can be born with this condition or it can develop during infancy, with congenital nystagmus being the most common. It is caused by abnormalities effecting the parts of the brain that control eye movement. It can be referred too as dancing or wobbling eyes and typically has an effect on the degree of vision. Nystagmus can sometimes be associated with the health condition Multiple Sclerosis and can sometimes be the first visual indication of the occurrence of MS. It can also be associated with other types of neurological conditions.
Helpful Links and Organisations
The Nystagmus Network
UK based charity that supports children and adults who are living with Nystagmus. They have been established for 40 years and are at the forefront of funding services that provide support and information, research into the condition and raising awareness.
Nystagmus Awareness day is an internationally recognised event, created by The Nystagmus Network. It was established in 2020 and it is held each year on 20 June.
Click here to find out what ways they can support you
Click here to find out how they can support your child in education
Click here to find out about localised monthly meet ups
Click here to find out more about Nystagmus Awareness day
RNIB
A national UK based charity that supports both children and adults with a variety of sight loss conditions. They have a comprehensive page about Nystagmus, covering the different types of the condition, how it can effect sight, how it can be managed and coping with the Nystagmus.
Click here to find out more information about the condition
Click here to download the ‘Understanding Nystagmus’ booklet
Eye Care Trust
A registered charity that exists to raise awareness of all aspects of eye health and the importance of regular eyecare. The charity is governed by a board of trustees representing a broad range of interests from across optics.
Guide Dogs UK
A national UK based charity that has developed a wide range of services with and without dogs to support people living with a vision impairment. Children and adults. Friends and family. They have a nystagmus support section on their website that provides diagrams and personal stories relating to the condition. It is a common cause of vision impairment in children, who will benefit from early help and support to make the most of their eyesight. For adults, nystagmus can be a sign of another underlying condition that needs treatment.
Click here to watch Nicky’s story
Click here to see eye diagrams of an eye effected by Nystagmus
Great Ormond Street Hospital
Great Ormond Street Hospital (GOSH) is one of the world’s leading children’s hospitals. Services at GOSH for children with a vision impairment include the Eye Clinic Liaison Service, Developmental Vision Clinic and Resource directory.
Click here to visit the information page about Nystagmus
Connect with other parents and find support with VICTA
Join the VICTA Parent Network – with almost a thousand members! You’ll find parents who have vision impaired children of all different ages and with various eye conditions. You can use the group to ask questions you may have and connect with parents of children with shared conditions or from your local area.
Visit the support section of the VICTA Parent Portal here to find out about support groups, both in your area and online.
VICTA activities
VICTA is a national charity supporting children and young adults who have a vision impairment from 0 to 29 years. We have a calendar of fun and engaging activities across the year to help young people make friends, grow in confidence and gain the skills they need for an independent future.
Visit the VICTA activity calendar >
Stay up-to-date with VICTA’s news and latest activities on social media @VICTAUK.
Nystagmus stories
Wobbly eyes, the tell-tale sign.
Nystagmus aka wobbly eyes, how this condition became the first noticeable symptom of my daughter's vision impairment- by Charlotte Mellor. I have written previously about my early diagnosis journey in discovering my daughter was vision [...]
Watching my child grow wings
Congratulations to Emily Woodhams-Beazeley who is the winner of December's Blog Factor competition with her celebratory post! My daughter Poppy is eleven and has the eye conditions retinal dystrophy and nystagmus, along [...]
Parent’s Perspective – Dad’s Voice
Dad’s Voice, by Dave Wood Being the parents of four means a busy life. We have three girls and a boy, each with their own challenges. Both my wife, Gill, and I play our part [...]
