Post on 01-Jan-2016
www.nystagmusnet.org 1
Nystagmus: the everyday impact of weird and wobbly eyes
John Sanders, NN development manager
john.sanders@nystagmusnet.org
9th November 2012
www.nystagmusnet.org 2
Research
Leicester University: “Living with nystagmus: a qualitative study.”
Published in the British Journal of Ophthalmology (http://bjo.bmj.com/content/early/2012/04/18/bjophthalmol-2011-301183)
9th November 2012
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Research findings
Nystagmus affects everything
Almost half the participants wept while being interviewed
9th November 2012
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Parent
“And finally to say that we are indebted to NN and for the incredible support we received when we were completely lost in the wilderness of the medical world.”
9th November 2012
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Adult with CN
“I have read the attachment that you sent and I was staggered at my reaction. I sobbed and sobbed for hours with absolute relief.”
9th November 2012
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Adult with AN
“People don’t understand. The support and information from people like yourself is invaluable.”
9th November 2012
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Hospital orthoptist
“Your leaflets are really helpful. We give them out to parents and they are so grateful. No-one else does anything like this.”
9th November 2012
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The vision problems
Poor quality of vision
Distance
Direction
Time
Clutter
... and vision can change from minute to minute
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The look problems
Wobble
Head posture and/or nodding
Eye contact
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Null point
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The social problems
Low self confidence, negative feelings
Socially awkward (not fitting in)
Personal relationships
Taking part
Anxiety about the future
9th November 2012
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Wider impact
• Family and friends• Colleagues• Strangers• Professionals
– Questions so far?
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How can we help?
• Flexible information– Website and social media– Phone and email– Publications
9th November 2012
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How can we help?
• Flexible information• Peer group support
– Face to face contact– Virtual contact through social media and
website– Personal experiences in newsletters, etc
9th November 2012
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How can we help?
• Flexible information• Peer group support• Knowledge = ownership = confidence
9th November 2012
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Thank you
“Had it not been for NN I don't know what we would have done. I think just knowing you are not alone is a massive comfort.”
Any questions?
9th November 2012