Usher syndrome

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Foxrac

Foxrac

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Does anyone on forum have Usher syndrome?

Yea, I have it since found when I was 13 years old but no change or worse for 5 years then if nothing to find wrong for more than 10 years and it means doctor is just to make mistake with research, also too hard to find it.
 
volcomskatz said:
Does anyone on forum have Usher syndrome?

Yea, I have it since found when I was 13 years old but no change or worse for 5 years then if nothing to find wrong for more than 10 years and it means doctor is just to make mistake with research, also too hard to find it.
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Sorry to hear, let me ask you a question, can you see at nightime, walk on your own at the pub, disco?

My friend is Usher syndrome, he don't look like one to me, but wearing a glass and after knowing him for a while, I can tell he has a tunnel vision, and was lost on his own at the Nightclub without a seesight guide.
 
Well, I dont have hard time to see at night and I just can see so well at night.

Some other countries are under developing new retina transplant but just cant until FDA approve and my doctor said that expected no later than 10 years. There's still developing at eye center in Utah.

I only have problem with floaters, that all.
 
One more to ask question.

If people have tunnel vision then it can still on computer, play games, read and walk around city?
 
I have friends who have various levels of Usher's Syndrome. One of them had it all his life and it hasn't really changed much. He's gotten used to it. His only weakness is that he can't see broadly in the dark. Another friend has it, but it was degenerative. So, she's now legally blind.
 
What is denegerative? Does she have tunnel vision?

How old are both of your friend?
 
I don't think if I have it because doctor can be wrong, also I don't have hard time to see at night and my eyes are stable for 5 years since 13 years old. Doctor is just start research on most deaf children and start different test for them but doctor is just take good care with them, also research for usher syndrome is too hard. Only change in eyes are via blurry, that can see so well with corrective lens.
 
I has some freinds as Usher Symdrome along my ex-wife. Few of them has been difficult seeing at night as common. Not everyone could driving during only daytime (Few ones didn't want to tell DMV about their symdrome at first place).

Some gone declined vision later years and other stay same visions.

I still doing what my ex-wife's need like take her to shopping, be her guider, and helps her out what she could not seeing something.
 
volcomskatz said:
What is denegerative? Does she have tunnel vision?

How old are both of your friend?
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The one with degenerative US is 27 or 28.
 
I wanna to respond to this thread.. I do have Ushers Syndrome (for ADers who don't know). I was diagonsised with US when I was 6 years old.
 
volcomskatz said:
I means any members on AD who have it.
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There are some people who have it and aren't aware of it because they don't really notice and sometimes adapt to it.
 
VamPyroX said:
There are some people who have it and aren't aware of it because they don't really notice and sometimes adapt to it.
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Yea, its too hard to find it.
 
I have a friend who has Usher's Syndrome. I don't how bad it is for him though.
 
volcomskatz said:
Does anyone on forum have Usher syndrome?

Yea, I have it since found when I was 13 years old but no change or worse for 5 years then if nothing to find wrong for more than 10 years and it means doctor is just to make mistake with research, also too hard to find it.
Click to expand...

yes my adopted deaf daughter has one.... she is fine...dr said all children who has usher's sydrome are born that way.. it is gene hereditary... i made a research found out it was her real mother s side has it.... Lori did not know she has it until 13.. she found out.. she accepted it...
 
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I just asked mom and look up on medical record but doctor is just gave a signal for RP due family history. It wasn't start or worse in anytime but I don't have US, also sorry about made miskate. I just got signal from RP and diabete, that all but not know about what's going happen.
 
Mod's Note: Thread is closed due to the creator's request.
 
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