Home » Congenital Nystagmus -Just a Noticeable Differance
Congenital Nystagmus -Just a Noticeable Differance
Posted: Tuesday, June 10, 2008
by Sandra Simon
Hello World of Rare People, or Parents of Rare People!
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Congenital Nystagmus is a rare eye condition in which the eyes "dance". The medical and ophthalmologic experts can give you a more scientific explanation for this condition. I will give you the explanation given to me when I was 12 years old, by a compassiionate and wise Ophthalmologist in Detroit, Michigan. This is a simplified explanation, and not necessarily very scientific, or medically correct, but it helped me understand what I would later explain to other people that questioned this condition.
The retinas could be compared to photo film. The shutter (lens) opens and lets light in, which registers a picture for the filmr (retina) to register on its surface. The retina then sends this to the brain "to develop" into whatever the image was seen by the eye (camera).
Not only did I have rapid eye movement, (fast film), but the retina was not fully pigmented. This might be compared to film that is not fully pixeled. Thus, the eyes have to move rapidly to take advantage of whatever retina pigmentation was available.
As I said before, this might be over-simplification, and I might be incorrect, but to a 12-year-old that had withstood constant frustration at not being able to see clearly, and having my head shake, and my eyes dance, this was a type of reassurance. The low vision, to me, was a fact of life. I was angry because other people, adults and children alike, teased me, or made fun of a condition I could not control nor explain. "A type of cerebral palsy" one doctor told me. I always looked down, I couldn't bear having people notice my eye movement, or saying "You need new glasses!"
Until I was 35 years of age I was considered legally blind; but then I was guided to a teacher of self-hypnosis. I practiced and practiced, and visualized myself driving a car, and being treated almost like a "normal" person .
One day, a few months later, after some very strange, unexplainable experiences, I was behind the wheel of a car, in possession of a restricted drivers license. I didn't care if the drivers license permitted me to drive one hour a day on every other TuSatWed day! I was "Normal"!
My message to anyone who reads this, or knows someone that has Congenital Nystagmus;
Do Not Give Up visualizing your goal! Smell it, see it, hear it, feel it, Be it! The brain of a human being is very powerful; it's a computer! Feed it good stuff! Listen to it!
Most of all, turn the negative into a positive! You have "Just a Noticeable Difference" that will permit many people to remember who you really are! When you introduce yourself to someone, say: "You may forget my name, but you won't forget I'm the person with the Dancing Eyes."
Sandra R. Simon (nee Okun) was born with Congenital Nystagmus. The eldest of six xhildren, only she and the youngest inherited this genetically transmitted birth defect. Their parents were first cousins, yet neither showed any signs of this eye
condition.
Sandra worked as a computer and manual imput bookkeeper. She is an artist and, likes to dabble in photography.
Thanks to the Low VisionCenter in Las Vegas, she is utilizing aids which make movie and TV watching much more enjoyable.
She was born in South Haven, Michigan and is currently residing in the Southwest.
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Top-level comments on this article: (2 total)
» left by Anonymous
3 years 241 days ago.
Thanks for this information, Sandra. I have never heard of this condition. I'm glad you are doing better.
» left by Sandra from Las Vegas 3 years 241 days ago.
Thank you for your comment. There are available articles on a browser search for "Congenital Nystagmus" if you would like to know more. It is a rather rare condition, and the more people who become familiar with this condition the less prejudice and more understanding will be awarded those of us with Dancing Eyes. Sandra
Your brother, Frank, from Clicks-online is servicing my pet products website, Doolittles Pet Products, and in discussion mentioned your experience in breeding dogs and your love of pets. The question came up: "Do pets have Congenital Nystagmus?" I carry pet products for disabled pets, but question if any Veterinarians have discovered this eye condition in animals.
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