John Sanders, NN development manager. john.sanders@nystagmusnet.org. 9th November 2012. 1. www.nystagmusnet.org. Research. Leicester University: “Living with nystagmus: a qualitative study.” . . ID: 584649
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Nystagmus: the everyday impact of weird and wobbly eyes
John Sanders, NN development managerjohn.sanders@nystagmusnet.org
9th November 2012
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Slide2Research
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)
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Slide3Research findings
Nystagmus affects everything Almost half the participants wept while being interviewed
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Slide4Parent
“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.”
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Slide5Adult 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.”
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Slide6Adult with AN
“People don’t understand. The support and information from people like yourself is invaluable.”
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Slide7Hospital orthoptist
“Your leaflets are really helpful. We give them out to parents and they are so grateful. No-one else does anything like this.”
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Slide8The vision problems
Poor quality of vision Distance Direction Time Clutter ... and vision can change from minute to minute
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Slide9The look problems
Wobble Head posture and/or noddingEye contact
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Slide10Null point
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Slide11The social problems
Low self confidence, negative feelingsSocially awkward (not fitting in)Personal relationshipsTaking partAnxiety about the future
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Slide12Wider impact
Family and friendsColleaguesStrangersProfessionalsQuestions so far?
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Slide13How can we help?
Flexible informationWebsite and social mediaPhone and emailPublications
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Slide14How can we help?
Flexible informationPeer group supportFace to face contactVirtual contact through social media and websitePersonal experiences in newsletters, etc
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Slide15How can we help?
Flexible informationPeer group supportKnowledge = ownership = confidence
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Slide16Thank 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?
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