Hey! Deaf - Usher's Syndrome (type 1) here!

Zeo

The Debater
Premium Member
Hello guys, I am Zeo and I am considered as deaf-blind. As the title stated, I am fully deaf and I have usher's syndrome.

I know some of you guys already know what it is but I will go ahead and explain what the usher's syndrome are.

It's common genetic disease (or disorder, whatever floats your boat) that are often associated with deafness that can result in vision loss as you get older and may result in blindness.

Anyway, I can see far and I can read well, so I should be okay with the forums like this for a long time, hopefully! Heheh.

Anyway yeah, I have lot of experience with the forums but the reason I decided to join AllDeaf is because I wanted to have the civil discussion with everyone regardless of who they are, and have the respect for everyone no matter what.

I hope my stay in the AllDeaf will be worthwhile!

Love,
Zeo
 
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Bottesini

Old Deaf Ranter
Premium Member
Hi. Deaf/blind too, but from a completely unrelated cause from my deafness. Ocular Histoplasmosis Syndrome is the reason for mine.
 

Foxrac

Well-Known Member
Premium Member
Welcome to AD. :)

but...

I have Usher Syndrome (not sure if it is Type I or II so that why I need take genetic testing).

I'm completely devastated after my doctor told me that I'm not safe to drive anymore after 10 years of driving and there is no public transportation in my area. There are not many SSP in Alabama as well.

I have very bad week and I have to deal with depression and suicidal thought after loss of driving and lack of transportation options. :(
 

Zeo

The Debater
Premium Member
Welcome to AD. :)

but...

I have Usher Syndrome (not sure if it is Type I or II so that why I need take genetic testing).

I'm completely devastated after my doctor told me that I'm not safe to drive anymore after 10 years of driving and there is no public transportation in my area. There are not many SSP in Alabama as well.

I have very bad week and I have to deal with depression and suicidal thought after loss of driving and lack of transportation options. :(
Oooh that's too bad! I found out about my Usher's Syndrome during 7th grade (I think I was 13 or 14 at that time) but I didn't understand much about it yet so I wasn't too worried but I understand it fully now. I am currently 21 right now and lot of people are encouraging me to get a driver's license but I said no mainly due to the safety reason. I get tired really easily and I lose focus after a while, so I can't just see myself driving.

I still can see quite well but I do require tactile sign if people are signing too closely to me.
 

Foxrac

Well-Known Member
Premium Member
Oooh that's too bad! I found out about my Usher's Syndrome during 7th grade (I think I was 13 or 14 at that time) but I didn't understand much about it yet so I wasn't too worried but I understand it fully now. I am currently 21 right now and lot of people are encouraging me to get a driver's license but I said no mainly due to the safety reason. I get tired really easily and I lose focus after a while, so I can't just see myself driving.

I still can see quite well but I do require tactile sign if people are signing too closely to me.
I'm 27 years old and I didn't remember about lost most of peripheral vision - it could be earlier as childhood.

I didn't understand about Usher Syndrome until I was 18 years old but real diagnosis when I was 13 years old - loss of peripheral vision is hard to notice until lose more degree to make noticeable. I had first retina checked when I was 6 years old in 1994 but can't find anything was wrong and it was all normal, also my genetic testing in 1990 was all normal too.

I have 24 degree out of 30 degree on visual field exam but I felt that visual field exam is confused so I will have other one in next month, along with ERG.
 

DeafDucky

Well-Known Member
Ugh... visual field test... I have to do those every year (well if I could stay with an eye doctor long enough- I move too much).. just had one done and he wants to "discuss the results".... Also had an OCT test done...

Hate doing them.
 

CrazyPaul

Active Member
Welcome to AD!

My dear deaf friend from my work who also has US plans to retire soon. She will be 55 before retirement. BTW, she mentioned that the laser surgery helped her before she was going to lose sight a few years ago.
 

Zeo

The Debater
Premium Member
I'm 27 years old and I didn't remember about lost most of peripheral vision - it could be earlier as childhood.

I didn't understand about Usher Syndrome until I was 18 years old but real diagnosis when I was 13 years old - loss of peripheral vision is hard to notice until lose more degree to make noticeable. I had first retina checked when I was 6 years old in 1994 but can't find anything was wrong and it was all normal, also my genetic testing in 1990 was all normal too.

I have 24 degree out of 30 degree on visual field exam but I felt that visual field exam is confused so I will have other one in next month, along with ERG.
Oooh I see. Last time I got my vision checked... I believe my vision acuity on the right eyes are 20/25 while the vision acuity on my left eye are 20/40... So I can see quite well right now but I'm getting my vision test again in few days though, so we'll see the results.

Welcome to AD!

My dear deaf friend from my work who also has US plans to retire soon. She will be 55 before retirement. BTW, she mentioned that the laser surgery helped her before she was going to lose sight a few years ago.
Yes, I've heard about laser surgery helping people with Usher's syndrome a bit. It does help you keep your sight for longer and make your vision loss happen more slowly but you're still losing the vision as the time goes by though.
 

hoichi

Well-Known Member
Welcome to AD. :)

but...

I have Usher Syndrome (not sure if it is Type I or II so that why I need take genetic testing).

I'm completely devastated after my doctor told me that I'm not safe to drive anymore after 10 years of driving and there is no public transportation in my area. There are not many SSP in Alabama as well.

I have very bad week and I have to deal with depression and suicidal thought after loss of driving and lack of transportation options. :(
Get a grip man....
 

Foxrac

Well-Known Member
Premium Member
Ugh... visual field test... I have to do those every year (well if I could stay with an eye doctor long enough- I move too much).. just had one done and he wants to "discuss the results".... Also had an OCT test done...

Hate doing them.
Same here - I hate visual field test too but I had to do it to ensure that my central vision hasn't changed.
 

DeafDucky

Well-Known Member
Foxrac- he's telling you to 'man up' and quit whining.. or suck it up. That is how I am interpreting it. I am sure he will tell you...eventually.

Get a grip man....
seriously? What compassion...

Losing your vision when you are deaf is a lot harder than when a hearing person loses their vision. Losing ANY sense is difficult and challenging. In time most will accept it and learn ways to deal with daily life but good grief man... people ARE allowed to grieve.

I wouldn't know what to do if I couldn't drive anymore- you lose a lot of your independence when you lose that. Sure there is public transportation but you will only see it in the bigger cities, smaller cities may have bus routes but they are ridiculously limited.
 
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