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Wednesday, 12 November 2014 00:00

Partially Deaf, Partially Sighted, Totally Usher!

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My name is Fabrizio, I have Ushers and I am 35 years old. Or to put it another way, I am 18 with 17 years worth of experience! Like many Ushers I was born deaf and again like many that is all I thought it was. I did speech therapy, I played lots of sports, particularly rugby, and over time I got confident in myself and really did not see the deafness as a barrier to achieving any realistic goal that I set myself. I did notice that I suffered from night blindness in my teenage years, but thought nothing…
Tuesday, 11 November 2014 00:00

What is Usher Syndrome to Me?

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What does Ushers Syndrome mean? That was the very question I had asked myself when the doctors told me I had lost some of my eyesight and that I would very slowly continue to lose more. I didn't think they were telling the truth at first. How can you live your life and not know that you are are somewhat blind? My name is Clare Weigel, I'm from across the pond in Florida and I am 17 years old. I had the pleasure of going to the Boston Ushers Syndrome Coalition over the summer where I learned I was not…
Monday, 10 November 2014 00:00

Anum and Usher

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My name is Anum, I am 20 years old, soon to be 21. Some of you probably know that I have Usher Syndrome as we went to the same school. Where can I start? I was born in Africa, Kenya, some of you couldn't believe that I was born there but I was.   I was born hearing, then when I was about 8 months old, I got meningitis. My family wasn't expecting that to happen and struggled with what to do about me because I was only 8 months old. We went to the hospital for a few checks…
Sunday, 09 November 2014 00:00

The Day My Dreams Were Shattered

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  Hi. My name is Andi Nicole Horstkotte. I have Usher Type 2a. I was first diagnosed in 2012 when I was 30 years old. I was a brand new mama of a 7 month old boy and a photographer who had huge plans in that field of work. It was hard to grasp that the reality of my dreams were completely shattered...no more dream camera...no perfect vision to capture the beauty of nature and people. GONE. But you know what happened next? My friends and family had faith in me. They all came together and bought me a BRAND…
Sunday, 09 November 2014 00:00

Learning From Each Other

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  Usher Syndrome is a rare genetic disorder caused by a mutation in any one of 10 or more genes resulting in a combination of hearing loss and visual impairment, and is a leading cause of deafblindness. Usher Syndrome is incurable at present.    That is what you get when you google Usher. For me it's totally different.     I have RP (retinitus pigmentosa) which is the cause of the sight loss in Usher. I struggled with my sight loss for many years. Feeling angry, bitter, sad and annoyed.   Through social media I made contact with some awe inspiring…
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