Browsing All posts tagged under »usher syndrome«

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

February 10, 2014


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


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


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


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 […]

“Cancer has changed me as a person.” Meet Emma Boswell, who has set up a Cancer Support Group in London

September 24, 2013


A brand-new Cancer Support Group has been set up in London by Emma Boswell, who herself recently recovered from the disease. The group will aim to offer support and reassurance, and will be a safe place where people can share their experiences. It will meet between 5-7pm on 15th October, 19th November and 17th December […]

Nick Sturley: How having Usher Syndrome changed my life. Part 1 – My first diagnosis

September 12, 2013


This is going to be the most honest set of articles I’ve ever written about my Usher. In fact, it’s something that I have only talked about to a few close friends and family, because even after fifteen years this sticks in my mind like superglue. Here’s the first of three parts, about what happened to […]

Cristina Hartmann: A confession of sorts (on having Usher Syndrome)

April 10, 2013


I’ve agonized over writing this confession (for the lack of a better word) for months. I’ve decided just to come out with it. Many of you know that I was born profoundly deaf and received a cochlear implant when I was six. What many of you don’t know is that in the same year, I […]