It is confirmed....

BB, I am so sorry about it. :( :hug:

One of my closest friends has had US II and his vision has been reduced very very slow.

You will be okay as long as you have all support system in place to deal with it.

HUGS!
 
Royale said:
BB, I am so sorry about it. :( :hug:

One of my closest friends has had US II and his vision has been reduced very very slow.

You will be okay as long as you have all support system in place to deal with it.

HUGS!
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Thank you Royale and everyone else. :)
 
:hugs:

My hubby's ex fiancee has it but not sure which kind.
 
Hugs!! I'm glad you finally got a diagnosis, but still.....:hug:
 
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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I know this is a scary time for you. :hug: But now that you know you can begin to make plans for the future. My first college roommate many years ago had retinitis pigmentosa.
 
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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:hug: oh wow.
 
Thank you everyone. I do have a strong support system here and home. I appreciate each and everyones support here.
 
I'm so sorry to hear this, but glad for you that you have a good support system at home.
 
BB, I know two people with Usher's, I don't know which kind though.

They both got cochlear implants and fortunately for them the CIs were sucessful. One of them is following information about stem cell therapy for blindness very closely.

If you would like to e-mail them about it, I'm sure they would be happy to e-mail with you. Just let me know.
 
Jazzberry said:
BB, I know two people with Usher's, I don't know which kind though.

They both got cochlear implants and fortunately for them the CIs were sucessful. One of them is following information about stem cell therapy for blindness very closely.

If you would like to e-mail them about it, I'm sure they would be happy to e-mail with you. Just let me know.
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I wear two hearing aids and have moderate to severe hearing loss. CI is not an option for me right now since HAs works well for me.

Technology is great, and is looking forward to the stem cell therapy. I am afraid we are still a ways off for it to be approved in the United States. :) I appreciate the thought.
 
Babyblue said:
I wear two hearing aids and have moderate to severe hearing loss. CI is not an option for me right now since HAs works well for me.

Technology is great, and is looking forward to the stem cell therapy. I am afraid we are still a ways off for it to be approved in the United States. :) I appreciate the thought.
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I'm glad you don't need the CI yet and I hope your condition progresses very slowly.

I just mentioned what I mentioned about the two people I know so you could get an idea of what stage they are at physically. At this point they are both pretty much blind also. They are also both very much in the swing of things and one of them is working full time. It seems that they have been able to figure out how to manage it (including the constant slow adjustment of very little disability to where she is now) , so FWIW, I just wanted to pass that along also.
 
Today is the day I go back to the Eye Doctor and take the peripheral vision test, and some more testing to see how much peripheral vision I have left and how fast it is progressing.
 
Babyblue said:
Today is the day I go back to the Eye Doctor and take the peripheral vision test, and some more testing to see how much peripheral vision I have left and how fast it is progressing.
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It's sad to hear about this....will be praying and thinking of you!

What are the symptoms of this eye disease? Will surgery help?
 
rockin'robin said:
It's sad to hear about this....will be praying and thinking of you!

What are the symptoms of this eye disease? Will surgery help?
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Nothing right now, can be done for it. I will be fine, I have been talking to few other people that has Usher Syndrome. I am now on my journey to Deafblindness. I know it will not be an easy journey, but at least now I am aware of what may happen to me, and it is better than being ignorant to the facts.

It started out with night blindness then the peripheral vision gets smaller and smaller.
 
Babyblue said:
Nothing right now, can be done for it. I will be fine, I have been talking to few other people that has Usher Syndrome. I am now on my journey to Deafblindness. I know it will not be an easy journey, but at least now I am aware of what may happen to me, and it is better than being ignorant to the facts.

It started out with night blindness then the peripheral vision gets smaller and smaller.
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I admire ur braveness, BabyBlue...think positive. I, too, have problems driving at night, and do not do so. My vision seemed to worsen (after my ear surgery)...but the doctors said it was more likely from the drugs I was given. But, I do have to wear sunglasses during the day at all times, as the sunlight gives me migraine headaches (very long time now).

Keep up the good fight!
 
rockin'robin said:
I admire ur braveness, BabyBlue...think positive. I, too, have problems driving at night, and do not do so. My vision seemed to worsen (after my ear surgery)...but the doctors said it was more likely from the drugs I was given. But, I do have to wear sunglasses during the day at all times, as the sunlight gives me migraine headaches (very long time now).

Keep up the good fight!
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I also wear sunglasses pretty much anytime I am outside in the sun. Bright light and sunlight tends to hurt my eyes more than trigger my migraines. It very well may be the drugs but always follow your gut instince. Which is what I should have done a long time ago. If you are concerned about your eyes you can always goto the ophthalmologist to get checked out. Since there are several things that can distrupt your vision.

:ty: for the support. It really helps more than you know.
 
Babyblue said:
I also wear sunglasses pretty much anytime I am outside in the sun. Bright light and sunlight tends to hurt my eyes more than trigger my migraines. It very well may be the drugs but always follow your gut instince. Which is what I should have done a long time ago. If you are concerned about your eyes you can always goto the ophthalmologist to get checked out. Since there are several things that can distrupt your vision.

:ty: for the support. It really helps more than you know.
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Am planning to do so after Christmas, as will be getting new glasses for near-signtness....and ur welcome! Wish I could help you more!
 
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