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The place to share your thoughts and experiences. You may not realise it but just by being you and putting pen to paper you can help others.

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"Be who you are and say what you feel because those who mind don't matter and those who matter don't mind"

Dr Seuss

 

Friday, 25 September 2015 16:14

Trials and Tribulations of an Usher Mum and Dad

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As some of you may know, Jake our sixteen year old son was diagnosed with Ushers Type 2a 3 years ago, at the time Trev and I thought our world had ended and wondered how Jake would cope, he was a sensitive 13 year old, but we needn't have worried.…
Thursday, 24 September 2015 17:01

I can no longer hear with my eyes - Lets Talk Hearing Aids

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I was recently talking about cochlear implant and was told the reason those of ANY age with Usher Syndrome (deafblind) that are profoundly deaf and wanting cochlear implant and who pass the NHS assessment will qualify for bilateral implants, however for those just deaf only children are considered for bilateral…
Saturday, 19 September 2015 12:51

We Own The Equinox 19 September 2015

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Our sincere thanks go to Mark Dunning and his team at the Usher Coalition for their hard work in putting Usher Syndrome on the calendar thus resulting in so many deciding to embrace the opportunity to raise awareness of Usher Syndrome in one way or another, it's been fantastic. Our…
Wednesday, 16 September 2015 11:45

Hear No, See No, Techno!

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I recently read about somebody I know who has Usher Syndrome and had got into a very scary situation. Having Usher Syndrome this sort of thing is very easily done. An accident as simple as getting on the wrong bus in the dark, being put off the bus with directions…
Saturday, 05 September 2015 20:41

"5 degrees and Me"

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Another major hurdle, I've reached 21 years old and I still have "5 degrees" of vision still remaining. I know it doesn't sound great and possibly terrifying to many but I am able to cope, with a little support and understanding. What it also means is I need things to…
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Towards the end of last year I started communicating with Dan via Twitter.  Dan was working with Radio 4's In Touch and was keen to get me on radio to talk about Usher Syndrome. As Christmas got nearer we decided to look at doing something in the new year.  One…
Monday, 03 August 2015 17:38

Communicate Don't Assume

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Up until 12 I believed I could do most things, why not, I was deaf but with hearing aids could hear.  It did make communication an issue sometimes, group settings, noisy environments and bad acoustics did make life more difficult, using a phone could also be testing with my early…
Monday, 03 August 2015 17:15

A Mum's Numb Despair to Pride in Short

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How does a mum feel when she's told her 12 year old daughter is set to go blind - NUMB. First things first, get head around the condition, hate it with a passion and then decide on a plan of action and most importantly somehow tell your precious child the…
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