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Sunday, 09 November 2014 00:00

Learning From Each Other

Written by  Jo Speer
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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 people who helped me accept that RP may be rubbish but it is a part of me and to be honest I like 'me'. Without RP I would be someone else, I wouldn't have made the great friends I have (and ditched some bad ones).
 
I had heard of Usher Syndrome at the hospital when my condition was being discussed, it happens when you are under a certain age, medical stuff is often talked about in front of you but because of your age you are not part of the conversation. 
 
I struggled through my teens and twenties trying to find my place in the world stuck between the seeing and the blind world. Feeling very alienated from both. 
  
Part of my journey led me to social media where I met some amazing people, some with Usher Syndrome too, who I am now very proud to call friends. Proper friends too. I have met them in person and everything.  
 
Through these simply brilliant friends I have learnt so very much. Simple things like where to stand when I am talking to people in a presentation, or which room to choose so that the acoustics are right for hearing aids, to think about how I speak making sure I am clear and I am facing the person and the little things like repeating what someone said to my friends without making a big thing about it really make a massive difference.  
 
Jane and Claire were part of the reason why I applied for my guide dog. Rachel is the reason why I strive at work to be the best I can be. And Molly is the reason why I volunteer to speak for guide dogs and raise awareness. 
 

I will at every opportunity try to raise awareness of RP, Usher Syndrome and Guidedogs.

 
As a very wise woman said awareness is key! 

 

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