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Nystagmus – Expert warns children with disabling sight problem ‘being written off’, UK

A leading eye specialist has warned thousands of with a disabling sight disorder are being “written off”.

Jay Self, a consultant paediatric ophthalmologist at Southampton Children’s Hospital, said simple interventions used to improve the lives of patients with continued to be overlooked.

The condition causes the eyes to wobble and creates strobe vision, which makes it difficult to see moving objects, recognise familiar faces or perform everyday activities such as playing with toys and friends.

Although nystagmus, which affects around one in 1,500 people in the UK, can develop in later life, it is more commonly found in babies and – known as – and can be caused by many different underlying conditions.

While there is currently no cure, just under half of sufferers can be treated for associated problems to help ease their symptoms – but, for more than 50%, there are no other medical conditions to treat, which is when, according to Mr Self, doctors can “run out of ideas”.

“Nystagmus is a complicated condition to treat, with some isolated cases, some patients with other and some with systemic or neurological disease,” he explained.

“So it is understandable doctors will focus on diagnosing associated diseases and excluding treatable causes as a priority, but that does not mean the rest should be simply written off.”

Mr Self said many who are unable to receive treatment can be helped in a variety of simple but important ways, including simply fitting them with the correct and regularly updated glasses or contact lenses or sitting them on the correct side of the classroom.

“A significant part of the visual problems encountered by children with nystagmus is because of astigmatism and refractive error, which can be corrected with glasses or contact lenses,” said Mr Self, a senior lecturer in ophthalmic genetics at the University of Southampton.

“Similarly, children with nystagmus often have a direction of gaze in which the eyes move less rapidly and they can see more clearly, so simply advising schools to sit the child on the correct side of the class can have a profound effect on their ability to learn.”

He also suggested doctors should carefully assess if a child has a preferred head position to see more clearly and seriously consider registering young patients with a Certificate of Visual Impairment (CVI).

“If a child has to hold their head in a very eccentric position to achieve better vision, then surgery can be offered to re-align this preferred position into central gaze,” he said.

“Even if surgery isn’t a possibility, registering children with a CVI, even when their best, static visual acuity is reasonable, can impart a wide range of benefits which are easy for doctors to overlook.”

He added: “The children we see in clinic today with nystagmus will be working age for 50 years or more, so can we afford to disregard them as being beyond help?”

Source

University Hospital Southampton NHS Foundation Trust