Congenital Nystagmus
On 30 July 2005, we went for A'shadieeyah's 3 months check up. She was given her 3 months jab. Besides that we were also told that she's having a vision problem. Like a big rock fall on my head, the news really hit me and hubby. Her peaditrician asked us to bring her to the opthamologist to confirm the news.
Later on 1 August 2005 we brought her for a thorough check up. The doctor, Dr. Zainal Mohammad than confirm that A'shadieeyah is having Congenital Nystagmus. Moreover the opthamologist told us that what A'shadieeyah is having is permanent. It really broke my heart. But I have to accept the fact and think positively for the sake of my little one.
What is Congenital Nystagmus?
Later on 1 August 2005 we brought her for a thorough check up. The doctor, Dr. Zainal Mohammad than confirm that A'shadieeyah is having Congenital Nystagmus. Moreover the opthamologist told us that what A'shadieeyah is having is permanent. It really broke my heart. But I have to accept the fact and think positively for the sake of my little one.
What is Congenital Nystagmus?
Reading through the Internet really frustrate me. The future looks so dark for my baby. It seems that my cute little girl going to go through a hard time when she grows up. I'm so sad when I look at her cute little face. I guess I have to be strong and stand by her all the time. As my hubby advise me when I broke into tears everytime I think about this, "what we can do now is pray". I pray to the Almighty, although this illness has yet to have a cure, I do hope that He will have some mercy for my baby and let she sees like normal people. I pray that miracle will happen and A'shadieeyah's vision will be back to normal just like any other kids. I put my faith in it. InsyaAllah...
Nystagmus is characterised by an involuntary movement of the eyes, which often seriously reduces vision. Many people with this condition are partially sighted; some are registered blind; few can drive a car; most encounter some difficulties in every day life - both practical and social - and some lose out on education and employment opportunities.
Depth of field vision is reduced by nystagmus with a result that sufferers may be prone to tripping or clumsiness. Co-ordination is usually adequate for most tasks, but nystagmus sufferers are unlikely to excel at sports needing good hand to eye co-ordination.
Incidence. Experts agree that nystagmus affects about one in a thousand people. One survey in Oxfordshire identified one in every 670 children by the age of two as having nystagmus. The flautist James Galway, our patron, is probably the best known person in Britain with nystagmus.
Causes. Nystagmus may be inherited or result from a sensory problem. In some cases it occurs for no known reason. It can also develop in later life, sometimes as a result of an accident or a range of illnesses, especially those affecting the motor system. You should always consult a doctor if you or a member of your family has nystagmus.
Effects. Nystagmus affects different people in different ways. While there are general patterns, good advice for one person may be inappropriate or even bad for another, especially where other eye problems are present.
Below are some observations which apply in MOST cases
Glasses or contact lenses do not correct nystagmus , although they should be worn to correct other vision problems. Nystagmus often affects the nerves behind the eye rather than the eye itself.
Nystagmus suffers are not simply 'short-sighted' . Many can and do register as partially sighted or blind. In Britain, few people with nystagmus can see well enough to drive a car.
Vision often varies during the day and is likely to be affected by emotional and physical factors such as stress, tiredness, nervousness or unfamiliar surroundings.
The angle of vision is important . Most suffers have a null point (by looking to one side or the other) where the eye movement is reduced and vision improved. Those of us with a null point will often adopt a head posture to make best use of our vision. Sitting to one side of a screen, blackboard, etc. often helps.
Small print . Many of us can read very small print if we get close enough or use a visual aid. However, the option of large print material should be available and all written matter should be clear. It is very hard to share a book with someone because it will probably be too far away or at the wrong angle.
Good Lighting is important. If in doubt get specialist advice, particularly as some sufferers are also light sensitive.
Computers are used by many people with nystagmus, who benefit from them as they can position screens to suit their own needs and adjust brightness, character size etc. However, some find it difficult to read computer screens.
Reading speed may be reduced by nystagmus because of the extra time needed to scan, but it should not be taken as a sign of poor reading.
Balance can be a problem, possibly because of poor depth perception, which can make it difficult to go up and down stairs.
- excerpt from Nystagmus Network.
