This was another day in my life when Ushers Syndrome had well and truly won. I’d had my shop for three years after struggling with the demons in my head after taking my redundancy. I’d started a shop selling wallpapers and soft furnishings, I’d had a huge build up of emotions. I’d ran the shop for three years, but Ushers was taking over. It was becoming harder and I was now on the waiting list for a guide dog. The shop landlord wanted me to commit to another three year lease and also to increase my rent. The time had…
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Hello! My name is Rick Brouwer, I am 49 years old and I live in Vlaardingen; a city near Rotterdam in The Netherlands. In the foto (left) you can see me running with a buddy. Yeah, that is also possible even when you have USher Syndrome! On 15 November at 7pm, 7 UShers together, participated in the 7 km night marathon over the 7 hills of the city of Nijmegen and I was one of them. It was an amazing experience. We Ushers had not only our buddys, families, neighbours and friends running with us but also doctors from the…
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Friday, 21 November 2014 00:00
An Extraordinary Girl in an Ordinary World
Written by Kristi Michelle McConnell
I guess you could always say I was unique from the time I was born. My mom had complications from the start of her labor with me, her water broke but instead of coming out it went inside and essentially I was drowning in the womb! I survived, of course, however it was just the start of the life I would about to live. The day before my 3rd birthday was the start of many surgeries in my childhood (I had over 30 but lost count of the official number) due to the result of my Eustachian tubes not being…
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"Mum I can't see the whiteboard at school properly" Me: "Are you sitting close enough to the board?" "I always sit near the board and the teacher, always have to otherwise I cannot lipread and miss out in class". Me: "I think you need an eye test, maybe you need reading glasses" "I'm also getting terrible headaches". An eye test was arranged for both daughters that coming weekend. Yes, both daughters as the younger daughter always felt she was missing out on the never ending appointments Molly already had because of her deafness - she now realises just how fortunate…
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I'm Jo from Newcastle, I'm 40 years old and I was born profoundly deaf. I had my 'eyes' and I used them for lipreading, scanning the world around me... & being deaf was just who I was. We, as deaf people, treasure our eyes so it was absolutely heartbreaking to discover I had Usher Syndrome. I became registered blind in my 20s and looking back over my childhood/growing up - it's obvious I had Usher - I put 'linking a friends arm' down to the fact that I was lipreading and was a little clumsy! It takes a huge amount…
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