Nystagmus FAQ

Nystagmus FAQ

Most people searching for information about Nystagmus are parents who, after having noticed their child's unsteady gaze, dropped in to the doctor to check out what they hoped was a minor problem...

What is Nystagmus?

Nystagmus is an involuntary movement of the eyes, which is often characterized as being “jerky”. For general information or to find a Nystagmus mailing list, check out the Nystagmus Network Homepage or the UK Nystagmus Action Group page.

What is the difference between congenital and acquired Nystagmus?

Congenital Nystagmus is that which exists from birth or soon after. Apparently, some Nystagmus is normal in an infant, but it should be investigated if it persists.

Acquired Nystagmus can appear later in life as a result of medications, head trauma, tumors, and a variety of other things.

What is visual acuity like with Nystagmus?

Anywhere from 20/20-20/400 with Nystagmus alone. (What do those numbers mean?)

What causes congenital Nystagmus?

Nystagmus is not the result of something the parent did or failed to do. It can be hereditary but often it isn't. It can be the result of another condition (which is why, when the symptoms of Nystagmus are noted, the parents should see a doctor) or it can appear alone. Sometimes a cause can be attached to it, but for the most part, the reason for it remains unknown.

Has Nystagmus been linked to Shaken Baby Syndrome?

Absolutely not. For more information about this misconception, go here.

My child has Nystagmus. What now?

Nystagmus has potentially far-reaching consequences, depending on the cause, the supports available, and the age of onset. It may cause a visual impairment ranging from the minor to legal blindness. Some people with Nystagmus can read print while others opt for a different medium, like Braille. Most who have the right skills can go on to lead normal lives, whatever their level of visual acuity. (My kid has a visual impairment. Now what?)

Why is my child tilting/shaking her head?

The first thing a child with Nystagmus tends to do when she starts trying to focus is to search for her null point - a point in her field of vision where Nystagmus is the least active. As the child grows older, she will begin to develop more control over the Nystagmus.

In a few cases, a child with a serious head tilt may require surgery to "move" the null point to a more convenient location.

Both children and adults with Nystagmus often engage in head shaking (or bobbing). There are a few theories as to why this is occurs, the most widely accepted being that the individual is trying to accommodate the unsteady gaze caused by Nystagmus.

How can I compensate for Nystagmus?

There are some things a person with Nystagmus can do to improve his ease when reading or interacting with the environment:

Make sure there is proper lighting and contrast
Bold labels.
Keep glare to a minimum.
Get appropriate mobility training.
Use reading materials best suited to your needs (e.g. large print, materials with the proper contrast of text to paper colour, or Braille).

What are some problems that can interfere with reading?

Usually, a reading problem is caused by one or all of the following factors;

Low contrast between print and paper
Poor lighting
Keeping the reading material too far away.
Font size too small
No use or improper use of optical aides.
Other impairments.

MYTHS AND FACTS:

MYTH: People with Nystagmus see their world as always moving.

FACT: Most people with congenital Nystagmus view their world as stationary. With acquired Nystagmus, on the other hand, many complain of jumping objects.

MYTH: People with Nystagmus can't play sports.

FACT: Although Nystagmus can affect balance and depth perception, many people with it can and do play sports. Some choose not to, depending on their degree of visual impairment, or their level of interest.

MYTH: People with Nystagmus can't drive.

FACT: While it's true that many can't drive, there are some with enough vision to qualify for a license. Even some who can't qualify, can pass the test with optical aids (depending on the laws of your province, state, or country).

MYTH: Nystagmus is a disease. People who have it are considered patients.

FACT: It's a condition, and people with Nystagmus aren't considered patients unless they're under the regular care of a doctor.

MYTH: People with Nystagmus will never live independently.

FACT: Not true. As with blindness, hindrances to living independently are largely educational.

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