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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


Thursday, 21 May 2020 16:15

The Reality of Usher Syndrome

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Well folks today so far for me has been a real rollercoaster of emotions. To be honest I’m usually very straight forward and generally a get up and go sort of person, however today it felt very different!  Firstly I got up later than normal 10am which is not like…
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Having Usher Syndrome is a rollercoaster of emotions as your vision ebbs away. Going blind is all consuming so much so we almost lose sight of the real importance of access to sound. For me going blind took precedent! I had retinitis pigmentosa and I had macular oedema.  My consultant…
Friday, 10 January 2020 15:10

A Decade of Progress

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Well it’s the year of 2020 everyone!  It certainly has been a time of reflection for me, as a result I wanted to share my last decade in a blog that might provide hope for those living with progressive conditions such as mine.  As hard as it can feel there…
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…
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