Nystagmus
The biggest lesson I’ve learnt is not to be embarrassed if you need help and not to be scared to ask – Wil Maudsley
image by: Nystagmus Network
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Can people see past my wobbly eyes?
It’s a traumatic experience for parents when their baby is diagnosed with an unknown condition. Mine didn’t know what to do when the doctor told them that their little girl had nystagmus; but then what could they actually do?
It’s just one of those things. Yet it didn’t seem like that at the time. Even though my condition was congenital, the initial reaction wasn’t to consider that I wouldn’t know any different. Consequently they had no idea what to expect. Would it prevent me from leading a normal life and making friends?
I was brought up not to consider my visual impairment a disability, nor a negative characteristic that limited my activities. At a younger age I couldn’t…
Resources
Mark's Story
I’m the youngest of three children and I think that helped a great deal in dealing with Nystagmus – at least I hope it did. Either that, or I was born into a group of eccentrics who somehow guided me through a foggy minefield to where I am now. I often wonder how it happened – luck or design?
Understanding Nystagmus
Nystagmus is an involuntary rhythmic shaking or wobbling of the eyes. The term nystagmus is derived from the Greek word, “nmstagmos”, which was used to describe the wobbly head movements of a sleepy or inebriated individual. Nystagmus has also been described as “dancing eyes” or “jerking eyes”.
What is it like living with nystagmus?
I was born with Congenital nystagmus (CN). To the non-doctor folks out there, for me that means my vision is blurry, and my eyes or head shakes from side to side. My vision has always held me back in life. I did struggle to read the white board at school, college and university. I struggle to recognise faces from a distance (and it doesn't have to be that far), and I also struggle to see facial cues or other gestures people may be making.
Can people see past my wobbly eyes?
If I didn’t have nystagmus I wouldn’t have something interesting enough in my life to blog about and if it wasn’t for my blog, I wouldn’t have the job I’m currently in. Bottom line is that every cloud has a silver lining.
Nystagmus Network
The Nystagmus Network is the oldest charity in the UK providing support and information about the eye condition nystagmus. The charity was established in 1985 and has been at the forefront in the promoting a better understanding of the condition as well as leading the way in funding the research to find effective treatments.
The Great Thames Row
At present, there is no known cure and it affects at least 1 in 1,000 people, usually first appearing from around 6-9weeks old. It is the most common form of serious visual impairment in children.
The Shifty Eyes Blog
A Blog about Life with Nystagmus.
Walk for Wiggly Eyes
Walking the full length of New Zealand to cure Nystagmus. Aiming on starting in mid-December 2019, the walk should take me 4-4½ months to complete, so hoping to finish by mid-late April 2020. Weather and other factors could play a huge factor in that.
American Nystagmus Network
To improve the quality of life for all persons and families affected by nystagmus, through organized community support, education and public awareness.
For Little Eyes
Your stories on nystagmus.
Patient
Nystagmus can be defined as a repetitive, involuntary, to-and-fro oscillation of the eyes. It may be physiological or pathological and may be congenital or acquired. It is a symptom, not a diagnosis. It is usually involuntary.
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