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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

 

Monday, 14 October 2019 19:47

Ultimately we can all be winners

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This year saw me nominated for three awards, Young Digital Leader for Digital Leaders for the second time (Too old for that one again) Positive Role Model for Disability, National Diversity Awards and lastly second year running I made it onto Shaw Trust’s Disability Powerlist 100 and I am extremely…
Tuesday, 02 July 2019 16:00

Virgin Train #Fail

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We were truly horrified to hear of Molly's recent expereince at London's Euston Station and it must never happen again:   I travelled from Maidenhead to London Euston to catch a train to Warrington Bank Quay. I am registered DeafBlind and a Guidedog owner, I am a regular traveller.  On…
Friday, 28 June 2019 12:16

Helen diagnosis 'I felt my world fell apart'

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My name is Helen Colson. I’m 29 years old & live in Southport, Merseyside. I was diagnosed with Retinitis Pigmentosa and as I am moderate-severely deaf, Ushers Syndrome last year.  It wasn’t easy getting my diagnosis after Specsavers were concerned about my visual field test results and referred me (via…
Thursday, 27 June 2019 15:26

Olivia's Usher Life - Last few months of emotions

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Hello Everyone! Would like to wish you all happy deaf blindness week! I’m so sorry that I haven’t posted in it feels like ages! But I’ve got soooo much to tell you all and I can’t wait to tell you everything. I think this blog is going to be a…
Thursday, 27 June 2019 11:13

Where did our journey with Usher Syndrome begin?

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Where does our story begin..... Alice (now 16) was born profoundly deaf. In Oct 17 at a routine eye test (Alice has always worn glasses) they picked up an issue all we were told is she had black spots in her retina it was nothing to worry about!! That she…
Tuesday, 25 June 2019 14:11

The evolution changing Usher Syndrome

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Usher Syndrome is a strange thing, strangely it is evolving even though it hasn’t changed.  It remains a condition without a cure. There are variations in level of deafness, in level of blindness, in chosen mode of communication, in chosen method of mobility aid(s). We all have daily challenges living with…
Sunday, 23 June 2019 19:32

Whispers in the Dark

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It’s never been easy. Having to scan the floor in front of you when walking down the street. Having to pre-plan the route to the nearest toilet in a restaurant. Having to feel your way through an unfamiliar room in the pitch black. Having to hold onto your mate as…
Thursday, 16 May 2019 07:02

GAAD - Not if but how!

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Indeed back in the 19th Century it was Helen Keller who stated “DEAFNESS SEPERATES US FROM PEOPLE AND BLINDNESS SEPERATES US FROM THINGS”. Back then she was right, she lived in a time where there was no assistive technology to help her live her life and having read about her…
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