Steve McKay of charity, Nystagmus Network, explains what eye health and sight loss professionals need to know about nystagmus.
What is nystagmus?
Nystagmus means involuntary movements of the eyes. It can occur either shortly after birth, when it is known as early onset or congenital. It is known as late onset or acquired nystagmus when a person acquires the condition as an adult. There is no cure.
Congenital nystagmus can occur as part of a complex health disorder such as albinism or Down's syndrome. In other cases it can be connected to problems with the eye such as myopia or childhood cataracts. Sometimes it occurs for no known reason. Acquired nystagmus can result from head injury, stroke, multiple sclerosis and many other causes.
The symptoms
Nystagmus can affect people in different ways. Some people become tired easily or suffer from headaches, yet others will not experience either of these symptoms. Sometimes the eyes appear to twinkle, in other cases the eyes look as if they are swaying from side to side. Nystagmus is generally not painful and does not usually get worse with age, although it can change from time to time.
Nystagmus is often made worse by tiredness, stress, frustration, busy environments, and unfamiliar places. People with nystagmus:
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often have difficulty with steps and judging depth of field
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need more time to see things and people around them
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struggle with eye contact
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are unlikely to be able to legally drive
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seldom enjoy participation ball games.
What treatments are available?
Eye muscle surgery and drugs can help in some cases, but will not "cure" nystagmus. Glasses and contact lenses do not help nystagmus, but should be worn to correct other eye problems.
What is the "null point"?
It is the direction of gaze where a person with nystagmus has the best vision - the point at which eye movement is slowest. A person with nystagmus instinctively turns or tilts their head to make use of it. The null point can be in any part of the eye and the head posture can vary from person to person.
Will I need to see a rehabilitation worker?
Rehab officers and similarly qualified professionals can help with low vision and daily living aids, registration, disability living allowance (DLA), which will be replaced by the personal independence payment in April, and advice about other benefits.
People with nystagmus can generally register as sight impaired and sometimes even seriously sight impaired, some are eligible for DLA, these in turn switch-on other benefits. It is generally at this point that individuals and families are put in touch with voluntary organisation for visually impaired people.
Where can eye health professionals get more information?
Nystagmus Network produces a series of materials such as leaflets and posters for hospitals and professionals working with children who have nystagmus. These promote awareness and encourage children to talk positively about nystagmus.
Can I get involved?
Research into nystagmus is being carried out at various locations around the country. Anglia Ruskin University is currently looking for volunteers in the Cambridge area. Moorfields Eye Hospital, London, is starting a project later this year that will examine the effect contact lenses have on nystagmus. The University of Leicester is also looking at the effect of nystagmus on people's quality of life.
Further information
Nystagmus Network provides support, information and advice on the condition. For more information, please contact John Sanders at: john.sanders@nystagmusnet.org or telephone: 0845 634 2630 or 029 2045 4242.
Article published in NB magazine March 2013.