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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.

If you'd like to be a guest blogger please contact us.

 

"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

 

Wednesday, 13 July 2016 15:11

Being an Usher Mum

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Being an Ushers Mum.  In 2011 I went for routine eye appointment and after a small discussion, the optician wanted to refer me for some tests.  I immediately had an in house field vision test. Let's just say we know how that went !! I was a little naughty and…
Thursday, 07 July 2016 19:53

BA listened please listen more

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After my recent report regarding very unacceptable treatment whilst flying British Airways Premium Economy to Las Vegas in May I’m very pleased to announce that they have at least changed their ticketing practice and are now able to add both deaf and blind instead of just one disability, this should…
Saturday, 02 July 2016 11:49

Centre Stage Applewatch

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AppleWatch and smart technology are brilliant for people with Usher Syndrome!  I have Usher Syndrome, which means I was born deaf and in the last ten years I have lost most of my sight. What I see in good light is like looking through a small letterbox. The bits out…
Saturday, 18 June 2016 15:17

Unacceptable Audiology

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I have Usher Syndrome, I am deafblind and my condition is degenerative. The fact that it gets worse and my abilities change all the time means that I have to make continual adaptations in every task that I do. This leads to a continuous stream of appointments, meetings, letters, emails…
Saturday, 18 June 2016 13:34

Life is a Rollercoaster

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As part of my ‘rollercoaster ride’ I have experienced huge ups and downs over the years. A husband and four children comes with challenges but nothing out of the ordinary accept one child was born deaf and needed additional time and support.   The deafness diagnosis brought challenges within the…
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My outward journey to Las Vegas was nowhere near the way it should have been. The necessary call to ‘special assistance’ had been made by my mum prior to the trip and my specific accessibility needs spelt out then, again at check in and still sadly the necessary provision was…
Sunday, 22 May 2016 18:50

Usher to Usher

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I hope you don't mind but after researching usher's syndrome and RP I came across your blog and I wanted to introduce myself. My name is Bethanie (or Beth), I'm 23, I'm from Staffordshire but currently living in Newcastle upon Tyne and like you, I have Usher's Syndrome. I was born…
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Hi I am John Churcher and I have Usher syndrome type 2. I have always had a hearing loss and was diagnosed with retinitis pigmentosa at the age of 14, was then registered partially sighted in 1992 at aged 19 and registered blind in 2000. Currently, I have about 50%…
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