Experts at the University of Leicester have set their sights on improving the outlook for people in Leicestershire suffering from the eye defect nystagmus. Nystagmus is a condition that hampers an individual’s vision. A sufferer’s eyes will move continually and involuntarily, creating the appearance that the eyes are ‘wobbling’.
They are setting up a survey of people in the county who suffer from the condition and examining the treatment they receive. The aim is, ultimately, to know how many people have nystagmus in Leicestershire, and then use the survey to calculate a national percentage of sufferers, and to also understand if people have enough care within the NHS and other health care provisions.
Researchers from the University’s Department of Ophthalmology say it is probable that there are hundreds of people who do not realise they suffer from the condition and that, through a public awareness campaign, they can highlight the symptoms and find more people who suffer from nystagmus.
Professor Irene Gottlob and Professor John Thompson are spearheading the study into the causes, effects and numbers of sufferers.
Professor Gottlob, head of the University Department of Ophthalmology, based at the Leicester Royal Infirmary, said: “Nystagmus is an eye condition which affects an unknown number of people.”
“Those with visual problems are often unaware that they could be suffering from this medical condition, as it is one that not many of us will have heard of, yet it could be affecting more people than we realise.”
“Children can be born with the condition and they often adapt so that the world, through their eyes, do not continually move. However, their vision can be reduced and they can adapt abnormal head positions to calm down their eye movements.”
“On the other hand, an adult who develops Nystagmus will find it both frightening and disconcerting - when the movement of their eyes effectively makes the world rotate and spin around.”
“People can develop Nystagmus for neurological reasons, part of the effects of conditions such as Multiple Sclerosis. It is evident that there are many types of Nystagmus and more research needs to be done,” said Professor Gottlob.
The University of Leicester study will start locally and GPs, Opticians, health workers and hospital eye specialists will be asked how many cases they believe they have come across. The Nystagmus Network, the patient self-help organisation, made up of around a thousand sufferers and their relatives, is also providing a crucial insight into the way in which Nystagmus affects daily lives.
Professor Gottlob added: “Some sufferers will not know that they have Nystagmus so we are going to advertise in newspapers in the hope that more people will come forward.”
“They will be diagnosed whilst more valuable information will be gained for the research”. The ultimate aim of the study, though, is to support people with the condition. “We want to see if there’s enough help for patients and what treatment, if any, they are receiving. Many sufferers have not had an appropriate eye examination, do not know their type of nystagmus and that treatment may be available.”
Nystagmus can be treated in selective cases with medication and by eye operations. Professor Gottlob and her team have their sights set on a national survey, to discover whether one in one hundred, or one in one thousand, people have the condition. They hope not only to focus on the unknown sufferers, but also to open up the general public’s eyes to nystagmus.
The Department of Ophthalmology, at the University of Leicester, would welcome people with nystagmus, or their relatives and friends, as well as healthcare workers, to contact them. For further information, you can call Professor Irene Gottlob on (0116) 258 6291.
NOTES TO NEWSDESK:
For more information, please contact Professor Gottlob on 0116 258 6291.
A patient is available to talk to the media about the condition. Please contact Professor Gottlob in the first instance.
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