Wobbly Wednesday

Nystagmus

Today is the first-ever International Nystagmus Awareness Day! I am incredibly glad that this condition is receiving some attention, as it is thanks to a doctor knowing about nystagmus that we were able to find out about the J-Rex's eye conditions as early as we did. You see, when the J-Rex was four months old, her pediatrician noticed the movement of her eyes and suggested we see a pediatric opthamologist. After that first specialist visit, the rest is history - a history blessed with us having been able to take advantage of all kinds of early intervention resources and education that we might not have had access to, had our doctor not been aware of nystagmus.

So, in honor of the first Nystagmus Awareness Day, I'm going to throw some awareness your way with a brief FAQ about nystagmus and our family's experience with it:


Q: What is nystagmus?

A: Nystagmus is a condition in which the eye moves involuntarily, or "wobbles" in the socket. Sometimes the eyes will move back and forth over a large arc and other times the movement might look more like a vibration of the pupil to the average observer.


Q. Do the eyes ever stop moving?

A. Everyone who has nystagmus, has something called a "null point," which is an area in the eye where, if the pupil rests there, the movement will be reduced.  In some, the null point is in the same place every time while in others, the null point changes frequently.  Often, this area is in one of the corners of the eye, which is why people with nystagmus often will turn their head to the side when they are looking at something.


Q. How does this condition affect a person?

A. There are a lot of variables to the way nystagmus manifests, so it is bound to affect everyone differently.  In all honesty, I'm still figuring out how it affects the J-Rex.  The best explanation for  the ways this condition affects vision is from the Nystagmus Network website:

"Nystagmus is a dynamic condition, so apart from poor visual acuity (distance vision), it also affects our vision in terms of:

• Time: we need more time to see than normally sighted people.
• Distance: you may hear medical people use phrases like "nystagmus dampens on convergence." This means that the nystagmus eye movement is reduced the closer we get to the object being viewed. The less the eyes move, the easier and more comfortable it is for us to see.
• Effort: we need to make more effort to see what we do see than a normally sighted person would.
• Direction: often our best vision is in one narrow gaze direction only (the null point or null zone). In all other directions our vision is poorer.
• Movement: we find it hard track moving objects and in some cases may not see very fast moving objects. This includes for example footballs, vehicles, even subtitles on a TV or cinema screen.
• Oscillopsia: although people with early onset nystagmus do not experience the world moving all the time, we can experience this sensation (known as oscillopsia) when we are tired, stressed, anxious, ill or excited. People with acquired nystagmus experience oscillopsia most or all of the time.
• Variability: our vision can change throughout the day and will get worse when tired, stressed, anxious, ill or excited for example.
• Clutter/crowding: it is far harder for us to see in crowded, cluttered or busy places. Examples include busy streets, shops, railway stations, airports, school playgrounds, even busy computer screens.
• Balance: many people with nystagmus report problems with balance.
• Light sensitivity: although there is no known direct link between nystagmus and light sensitivity, many people with nystagmus are sensitive to bright lights, glare and sunshine because of associated conditions. These include albinism, rod/cone dystrophies and high myopia (severe short-sightedness)"

Q.  What treatment options are there?

A.  Unfortunately, there are not a lot of treatment options for nystagmus.  Glasses do not correct the condition and the J-Rex's specialist noted that a certain amount (not too much, obviously) of television watching can help strengthen the eye muscles.  Other than that, though... Some individuals grow out of it, others, whose null point is stable, are able to undergo surgery to reduce or correct the condition, and the rest? The rest adapt.


Q:  What adaptations are generally needed by people who have nystagmus?

A:  As I said before, nystagmus affects everyone differently, so the adaptations will vary from person to person.  Again, I refer you to the Nystagmus Network website for more information, but in the case of the J-Rex, she tends to need proper lighting (reduced glare), large print, meditative/calming techniques (due to the fact that nystagmus can get worse with strong emotional states), the ability to hold things close to read/see, environments with reduced visual clutter (when they can't be avoided, navigation help is often needed in these environments), and frequent breaks when reading/writing.


Q: Why are we raising awareness about this condition anyway?

A:  Often, the public's lack of knowledge about disabilities like this can be as much a difficulty as the condition itself.  To give just one example, I invite you to read a recent article in the Huffington Post about employment issues and the blind, The Blind Have A Hard Time Getting Jobs Because Of Social Stigma.  

Q:  Is there anything I can do?

A:  You could find a way to donate to an organization that serves the visually impaired, which is great but not something we all can do.  Better yet to simply learn more: Find out everything you can about nystagmus, absorb that knowledge into the way you treat people you encounter that have the condition (and anyone else with a disability for that matter), let your understanding change how you see your society and its obligations, and tell others what you've learned because the world will never change for those who struggle with disabilities until the stigmas borne of ignorance are replaced with understanding based on information.  Knowledge is power!


Q: How can I learn more?

A: Visit any or all of these great online resources:

• Nystagmus Network (UK Network)
• American Nystagmus Network
• Nystagmus Wikipedia Article 
• American Optometric Foundation Nystagmus Article
• and, last, but not least, a brave and well-spoken girl with nystagmus made a great video explaining her condition that is definitely worth the watch: http://youtu.be/BToFOxAaueQ