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Friday, 29 May 2015 13:57

Being born with Usher Syndrome - GET it RIGHT

Written by  Dorset Dan
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I was born with Usher Syndrome in 1960, I'm born Deafblind but it wasn't properly diagnosed until I was 28.

I had hearing aids from age 9, I was clumsy, I was going blind even then and I was told I was slow as I didn't speak very much and I was bullied.

Growing up was very difficult, life was hard from the beginning.

I have never written a blog before but I'm very upset with the media reporting wrongly about usher syndrome making it sound life is fun and easy.

I have fought all my life to explain what Usher Syndrome is  for some journalists to get it completely wrong.

I am deaf, I wore hearing aids to access sound for 30 years and as a result I can speak.

My hearing got worse with age and 5 years ago I was lucky to get a cochlear implants.

I am not miraculously cured of deafness I am still deaf I am just able to access sound.

My blindness was with me the day I was born but progressed slowly and I have been registered partially sighted for many years.

Dual sensory loss is not fun, it is hard to live life always needing to explain personal needs, hard enough without the press not researching the condition, getting wrong and making it sound like everybody with usher syndrome is having fun being Deafblind - it is not fun and I find reading nonsense or being told how I should be based on the nonsense these people write, upsetting and demeaning.

If anybody is interested the only thing on my wish list is for people to understand the condition..

Sorry to vent my frustration  

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