Moderator said on 03/10/2009 at 10:30 pm
jamesovhull said on 28 June 2009:
hi to everyone thats reads this message i'm james and live in the uk i am deafblind and wanted to find other people that are deafblind as well i hear that there are only six people in the uk that are deafblind with usher syndrome like me is there anyone here that is the same as me? if so i'd love to talk for all the other people that come on here i want to say hi and if you want to talk to me please do i love the company i hope i hear from anyone soon bye
from james
wendy said on 03/10/2009 at 10:30 pm
Hi James, my daughter has Usher syndrome. We found out nearly 2 yrs ago. She is very nearly 13.
She has some friends with Usher too, I met them through other web sites and we get together sometimes. Usher syndrome is not as rare as you first thought!
Go on www.usherlife.co.uk and also Usherlife on Facebook. There is also a Facebook group called Usher fighters which was started by someone who found out they have Usher last year, they live in North Lincolnshire!
There are 3 different types of Usher syndrome, you can get more info from www.sense.org.uk but basically it's;
Type 1 Usher are born profoundly Deaf and use British Sign Language/DeafBlind manual alphabet.
Type 2 Usher have partial to severe hearing from birth and are often oral. Some sign, some don't.
Type 3 Usher are born hearing and then loose hearing and vision later (this type is the rarest)
RP in all 3 types are diagnosed at different ages.
My daughter is severely deaf. Her hearing is getting worse, she has 2 fab hearing aids, she is oral with a lovely voice but can use BSL as well. She went blind very quickly (which is pretty rare) and now uses braille.
There is a lot of cool technology out there for people with Usher syndrome.
It'd be great to hear back from you James. Let me know if you want my email address.
Wendy :)
Moderator said on 14/09/2009 at 6:40 pm
Kristain said on 29 August 2009:
Hello Friends......Deafblind people communicate in many different ways determined by the nature of their condition, the age of onset, and what resources are available to them.Deafblind people communicate in many different ways determined by the nature of their condition, the age of onset, and what resources are available to them
Regards
Kristain
Assistant Manager
http://www.recoverybull.com
Moderator said on 14/09/2009 at 6:39 pm
jamesovhull said on 15 July 2009:
braille is hard to use i have had an attempt the other day but got it all wrong but when i start classes is with be easyer.
i can understand i used to lip read its the easyest way to follow a convo but i hardly see that good now.
wow i think signing is realy hard i can do the ABC but thats it when i was a child i had to sign to talk to people but since i learnt how to talk i have forgotten how to sign if that makes sence? weird but it happens.
will you go deaf in the future or is it just the vision?
james
Moderator said on 14/09/2009 at 6:39 pm
MatthewEverington said on 15 July 2009:
The link that you need is
http://www.thrive.org.uk/
I learnt deafblind due to the fact that I have Neurofibromatosis 1, my mother us to run a local group for sufferers and a Neurofibromatsis 2 sufferer is likely to be deaf and blind and lowand behold w met one so I learnt how. British Sign Language always interested me so after learning the alphabet many years ago I learnt BSL and passed course 1 as an evening course, obviously needin a helper in the class cos I couldnt lip read the teacher, now I can hardly lip read even at 3 foot. I suppose I should learn Braille
Moderator said on 14/09/2009 at 6:39 pm
jamesovhull said on 15 July 2009:
hi mathew thanks for the reply do you have the link to it? and its good you know how to sign i can't sign myself as i'm having my hands full learning to read braille and i spend most of my time with charlie my guide dog but i am wanting to learn at some point.
i have ushers syndrome which is rare i guess i'm unlucky how did you learn to sign?
james