ushers type 3

I

inmate23

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hi

does any1 no what are the tests for ushers type 3?

what other conditions cause deafblindness starting as teens and laser eye surgery does not help by the age of 40?

only 2 genrations of info because mother is adopted
 
I was diagnosed with usher syndrome type 2 when I was 13 years old.

I do know about usher syndrome type 3 - hearing loss and vision loss in combined.

You will be night blindness at beginning, mostly are start in late childhood to teenagers. I don't have any experience about how is night blindness looks like that but hard to tell. When I turned room light off so I cannot see anything, except for time alarm LED so got used with night in few minutes to make notice of many LED lights so don't know if it is normal or not. Your side of vision will degrade in every years until it reach tunnel vision so you will become a legally blind, sometime, your central vision will be loss until completely blind so it is depends on person to person. Some people have enough vision for rest of their life and some people's vision are changing so faster than normal.

My vision hasn't been changed for 10 years, according to my vision doctor in last spring and I'm on great candidate for LASIK. I have a hard time to believe my special vision doctor about usher syndrome but I found that some people could be small or unchanged for rest of their life. I don't have a much problem with driving at night but sometime, it could be frustrated if lacks of light source.

For usher syndrome type 3, I believe that you will start experience hearing loss until severe to profound deaf then vision loss will be next. I could be wrong so please correct me.

There is currently no cure or treatment for usher syndrome, even eye laser surgery won't help. The researchers are working on stem cell that may cure usher syndrome.

You can take a high dose of vitamin A everyday to delay of vision degrade to up to 10 years, or eat plenty of carrots. You can drink carrot juice that has high percent of Vitamin A instead take Vitamin A pills.
http://www.lakewoodjuices.com/product_detail/id-31/
 
Foxrac said:
I was diagnosed with usher syndrome type 2 when I was 13 years old.

I do know about usher syndrome type 3 - hearing loss and vision loss in combined.

You will be night blindness at beginning, mostly are start in late childhood to teenagers. I don't have any experience about how is night blindness looks like that but hard to tell. When I turned room light off so I cannot see anything, except for time alarm LED so got used with night in few minutes to make notice of many LED lights so don't know if it is normal or not. Your side of vision will degrade in every years until it reach tunnel vision so you will become a legally blind, sometime, your central vision will be loss until completely blind so it is depends on person to person. Some people have enough vision for rest of their life and some people's vision are changing so faster than normal.

My vision hasn't been changed for 10 years, according to my vision doctor in last spring and I'm on great candidate for LASIK. I have a hard time to believe my special vision doctor about usher syndrome but I found that some people could be small or unchanged for rest of their life. I don't have a much problem with driving at night but sometime, it could be frustrated if lacks of light source.

For usher syndrome type 3, I believe that you will start experience hearing loss until severe to profound deaf then vision loss will be next. I could be wrong so please correct me.

There is currently no cure or treatment for usher syndrome, even eye laser surgery won't help. The researchers are working on stem cell that may cure usher syndrome.

You can take a high dose of vitamin A everyday to delay of vision degrade to up to 10 years, or eat plenty of carrots. You can drink carrot juice that has high percent of Vitamin A instead take Vitamin A pills.
Lakewood Juices
Click to expand...

thanks what are the testing that you had done?
 
How is Usher syndrome diagnosed?

Because Usher syndrome affects hearing, balance, and vision, diagnosis of the disorder usually includes the evaluation of all three senses. Evaluation of the eyes may include a visual field test to measure a person's peripheral vision, an electroretinogram (ERG) to measure the electrical response of the eye's light-sensitive cells, and a retinal examination to observe the retina and other structures in the back of the eye. A hearing (audiologic) evaluation measures how loud sounds at a range of frequencies need to be before a person can hear them. An electronystagmogram (ENG) measures involuntary eye movements that could signify a balance problem.
Click to expand...

Usher Syndrome Symptoms, Causes, Treatment - How is Usher syndrome diagnosed on MedicineNet
 
what happens during a electroretinogram?

im scared please dont quote a website at me
 
inmate23 said:
what happens during a electroretinogram?

im scared please dont quote a website at me
Click to expand...

It is like and EKG, except on the eyes. The put electrode on the cornea and around the eye on the skin and measure response.

I have a disease that is destroying my retinas. Believe me , that is a lot scarier than that test.

It is very useful for finding out exactly what is wrong with you.
 
ok found out today that its going to be a 7 seven month wait for the appointment(stupid state system)
 
inmate23 said:
ok found out today that its going to be a 7 seven month wait for the appointment(stupid state system)
Click to expand...
that was according to my gp

i rang the eye dept at the hospital and they said they havnt got the referral yet
 
I have CVI/Cortical Vision Impairment meaning my eyes and the connection to my brain isn't working as well- but I have low vision meaning I can see some things but not normal like a sighted person's vision. I have tunnel vision and night blindness as well as severe hearing loss but do use FMs and new Naida V bluetooth hearing aids ultra power.
So I am deafblind but have residual hearing/vision. Some days are bad and some are good as far as what I'm able to see/hear.
I use Braille as my main medium and sign language ASL/Signed English mix, when my hearing craps out. Whenever I don't wear my hearing aids- ASL we go! I love it and my interpreters in college were awesome. They had a class before working with me, that taught them how to work with someone with deafblindness (low vision/blindness, HH/Deafness).
I was almost dx with Ushers type 3 I think, but I don't have RP/ROP so I don't have Usher's I don't think.
So all I know is that my vision sucks and my hearing is almost gone. But I use what I have each and every day.
I use a guide dog and his name is Umbro. He is sleeping right now on the floor close by- my little boy. He is a yellow lab, male about 60lbs. He is a great guide dog and hearing dog. I use his ability to hear to my advantage and he also stops and looks back if he hears my name being called. I cannot hear from behind me so he helps me out a lot!

My twin sister is deafblind as well and we both have usable vision and hearing but its very limited and can be made worse with certain situations such as loud bus, restaurants, downtown or stores. We use ASL or speech, large print short-term and Braille long-term main medium. We use all of the skills we have and it comes in handy when vision and hearing changes during the day or over time.

I plan on teaching a lady who is deaf, going blind, the Braille Code for English. She didn't like an interpreter to go through her VR counselor so she asked if I would teach her. This will be my first time to teach someone that is primarily deaf but probably has Usher's. It will be a learning experience for me.
I interned at a center for the blind and had a few HH students and I loved i a lot.
 
MsMotif6 said:
I have CVI/Cortical Vision Impairment meaning my eyes and the connection to my brain isn't working as well- but I have low vision meaning I can see some things but not normal like a sighted person's vision. I have tunnel vision and night blindness as well as severe hearing loss but do use FMs and new Naida V bluetooth hearing aids ultra power.
So I am deafblind but have residual hearing/vision. Some days are bad and some are good as far as what I'm able to see/hear.
I use Braille as my main medium and sign language ASL/Signed English mix, when my hearing craps out. Whenever I don't wear my hearing aids- ASL we go! I love it and my interpreters in college were awesome. They had a class before working with me, that taught them how to work with someone with deafblindness (low vision/blindness, HH/Deafness).
I was almost dx with Ushers type 3 I think, but I don't have RP/ROP so I don't have Usher's I don't think.
So all I know is that my vision sucks and my hearing is almost gone. But I use what I have each and every day.
I use a guide dog and his name is Umbro. He is sleeping right now on the floor close by- my little boy. He is a yellow lab, male about 60lbs. He is a great guide dog and hearing dog. I use his ability to hear to my advantage and he also stops and looks back if he hears my name being called. I cannot hear from behind me so he helps me out a lot!

My twin sister is deafblind as well and we both have usable vision and hearing but its very limited and can be made worse with certain situations such as loud bus, restaurants, downtown or stores. We use ASL or speech, large print short-term and Braille long-term main medium. We use all of the skills we have and it comes in handy when vision and hearing changes during the day or over time.

I plan on teaching a lady who is deaf, going blind, the Braille Code for English. She didn't like an interpreter to go through her VR counselor so she asked if I would teach her. This will be my first time to teach someone that is primarily deaf but probably has Usher's. It will be a learning experience for me.
I interned at a center for the blind and had a few HH students and I loved i a lot.
Click to expand...

do have capd or a floating hl? and yes im saving up to buy braille teaching resources
 
Winz(social security) agreed to fund a eye test(a disillusion test and a normal test and photos) and i will be having those tests on monday and post results
 
ok good news sort of i dont have ushers but now we are going to neuro ophthalmologist to find out whats wrong
 
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