Nystagmus: the everyday impact of weird and wobbly eyes

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Nystagmus: the everyday impact of weird and wobbly eyes




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Presentations text content in Nystagmus: the everyday impact of weird and wobbly eyes

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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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www.nystagmusnet.org

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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)

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Research findings

Nystagmus affects everything Almost half the participants wept while being interviewed

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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.”

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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.”

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Adult with AN

“People don’t understand. The support and information from people like yourself is invaluable.”

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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.”

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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 noddingEye contact

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Null point

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The social problems

Low self confidence, negative feelingsSocially awkward (not fitting in)Personal relationshipsTaking partAnxiety about the future

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Wider impact

Family and friendsColleaguesStrangersProfessionalsQuestions so far?

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How can we help?

Flexible informationWebsite and social mediaPhone and emailPublications

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How can we help?

Flexible informationPeer group supportFace to face contactVirtual contact through social media and websitePersonal experiences in newsletters, etc

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How can we help?

Flexible informationPeer group supportKnowledge = ownership = confidence

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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?

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