Browsing All posts tagged under »usher syndrome«

Nick Sturley: 10 ways people positively survive having Usher Syndrome (BSL)

November 13, 2014

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Having Usher syndrome, a genetic condition that combines deafness and visual impairment, can be very challenging, as it is hard to avoid problems, isolation and feeling negative. All people with Usher syndrome are different individually; have different degrees of dual sensory loss; and have different methods of tackling their own obstacles on a daily basis. […]

Nick Sturley: 10 gripes that people with Usher syndrome share

May 30, 2014

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Having Usher syndrome there is never a single day that goes without a gripe or two when we would say: “Oh, give me a break!” to those who aren’t fully aware of our circumstances. I wrote the ten things people with Usher syndrome like about having Usher syndrome back in February. This is the light-hearted […]

Read: Guardian article on Usher syndrome – “Don’t define me by a condition I happen to have”

May 12, 2014

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Check out the Guardian’s article, written by our Editor Charlie Swinbourne and featuring Nick Sturley, by clicking here: Extract: Nick Sturley still recalls the train journey home from a hospital visit in London when he was 10 years old. His mother sat opposite him, reassuring him that she was fine, but even at that age he was a […]

Nick Sturley: 10 things people with Usher syndrome like about having Usher syndrome!

February 10, 2014

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It’s not that we really like having Usher. In fact, we really hate it because it doesn’t make our lives easy and we have to cope with it on a daily basis. But we always have to be positive. There’s no point in sitting in a corner and be miserable about it. We have to […]

Nick Sturley: How having Usher Syndrome changed my life. Part 3 – Adjusting to a new life

November 18, 2013

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Before reading this, make sure you’ve read the first part of Nick’s article by clicking here, and the second part by clicking here. About a year later, I retired from work at a ripe old age of thirty–one. Despite the human and technological resources I had at the BDA through Access to Work, I could no longer […]

Nick Sturley: How having Usher Syndrome changed my life. Part 2 – The big crash

October 15, 2013

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To read Part 1, click here. In 1997 when I was approaching thirty, it all began to change. Up to then, my vision had been more or less stable, despite the fact that retinitis pigmentosa (RP) is a progressive degeneration of the retina. All Usher people and hearing people with RP – or RPers, as […]

The Secret Deafie – Losing sight, gaining insight

October 2, 2013

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The Secret Deafie is a series of anonymous columns written by different writers. In this post, first published on this site in March 2012, a writer tells us about living with Usher Syndrome. When I was younger, I was just Deaf. I, like other Deaf people, held my vision sacrosanct. The idea of losing my […]