It is confirmed....

Babyblue

Babyblue

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A while back I created a thread about night blindness. I have been struggling since with some of the responses and basically avoided making an appointment.

Today, I went to the ophthalmologist. After two hours of testing, she confirmed that I have retinitis pigmentosa. She said with me being born Deaf and noticing my night blindness iwhen I was around 14 to 15 years old and it is slowly getting worse.

She offically Dxed me with having Usher Syndrome Type II. Not sure what to think of it yet. I basically knew it for a while. I go back in two weeks for more testing and she will talk to me more about it.
 
Buffalo said:
I am sorry about the news. At least type II is slower then type I. Did your eye doctor say anything about vitamin A? Usher Syndrome
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She said some research said vitamin A helps and some research said it doesn't help. Since vitamin A is fat soluable it tends to build up and become toxic. So she just told me to take a multi vitamin and eat vitamin A rich foods.
 
Oh no, I'm sorry. I've never heard of this before. The web site was very informative. :hug:
 
I have heard of it. Someone you may want to get in touch with BB, is, Mrs Bucket (You can get in touch w/her on facebook). She was born with Usher's Syndrome (I believe), and, might be able to help you shed some light on what happens during the course of the syndrome. Hang in there!

:hug:
 
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It sucks, I know. I can relate that with you (I have it too but I'm T1 but it's a slow progression in my case).

Last I heard we should take Vitamin B or anything that contains Beta Carotene to help slow the progress, especially with night blindness. Oh well, I can't remember. My memory's shot. :dunno:
 
Oceanbreeze said:
I have heard of it. Someone you may want to get in touch with BB, is, Mrs Bucket (**** on facebook). She was born with Usher's Syndrome (I believe), and, might be able to help you shed some light on what happens during the course of the syndrome. Hang in there!

:hug:
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I encourage you to remove her full name here on alldeaf. I know her that she rathers this more private.

my apologizes for blunting.
 
Babyblue said:
A while back I created a thread about night blindness. I have been struggling since with some of the responses and basically avoided making an appointment.

Today, I went to the ophthalmologist. After two hours of testing, she confirmed that I have retinitis pigmentosa. She said with me being born Deaf and noticing my night blindness iwhen I was around 14 to 15 years old and it is slowly getting worse.

She offically Dxed me with having Usher Syndrome Type II. Not sure what to think of it yet. I basically knew it for a while. I go back in two weeks for more testing and she will talk to me more about it.
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Im sorry. i have a several friends who have usher syndrome but i am not familiar with which type of usher syndrome. One of my friend have lots of island visuals. one of my friend only have one island spot to see, and other friend have two island/spots to see. most of them can't see well at night.

I hope they provides you all information what you are looking for. One of my friend decided to go to helen keller school for learning how to prevent from having accidents more.
 
We are not sure how fast mine is progressing yet. They are pulling my old records from different eye exams I have had in past. I know I had a few field vision test done in the past few years. I will find out that in two weeks.
 
I'm glad you were able to get to the bottom of it and find out what was happening so you can address it and make adjustments. I'm here for you, my good friend, if you need ever need to chat. You know where to find me. <3
 
I'm sorry to hear about this, BB. Hopefully, something will be done to alleviate or greatly slow down this progression. Hang in there!
 
Tousi said:
I'm sorry to hear about this, BB. Hopefully, something will be done to alleviate or greatly slow down this progression. Hang in there!
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Tousi,
The Dr. said people with type 2 rarely lose all their vision.
 
Sorry Babyblue. I have a disease that affects the retina too, but it goes opposite from RP ,destroying central vision.

It's hard to adjust, but you will. It takes time.
 
Thank you all. Even though I suspected it for a while. It really made my heart sink when I heard the Dr. say the word retinitis pigmentosa. I guess it forces me to actually deal with it now.
 
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