Who Have Usher Syndrome type one?

[Babyblue]

I suspect I have type 2. I'm actually am not in Denial. I know I need to do something. Sadly I have not yet, There is one place in Lakeland Florida called the Lighthouse for the Blind. I'm not sure if that is the place I need to call, to assist me. I also have no insurance and really can not afford to see a specialist to confirm it.

I don't drive at night.

 

[rhr]

you said "I don't drive at night."
Can you drive at front downsun? I cannot driver it but I can see only left, right, or rear downsun becuase I cannot see taiffic light, exp: downsun at 5pm, I must leave at before 3pm for front downsun, if downsun rear, i must leave before 4:30pm to home, but no more I lost Driver no more, I am sad!

I am both blind night and blind shadow (for front sundown)

I suspect I have type 2. I'm actually am not in Denial. I know I need to do something. Sadly I have not yet, There is one place in Lakeland Florida called the Lighthouse for the Blind. I'm not sure if that is the place I need to call, to assist me. I also have no insurance and really can not afford to see a specialist to confirm it.

I don't drive at night.

 

[Babyblue]

you said "I don't drive at night."
Can you drive at front downsun? I cannot driver it but I can see only left, right, or rear downsun becuase I cannot see taiffic light, exp: downsun at 5pm, I must leave at before 3pm for front downsun, if downsun rear, i must leave before 4:30pm to home, but no more I lost Driver no more, I am sad!

Sorry you lost your drivers license. I do drive during the daytime, but one darkness falls I do not drive.

 

[rhr]

I not test Drvers license from DMV
only I decide quit drivers license

but Can you see any shadow?

you said "I don't drive at night."
Can you drive at front downsun? I cannot driver it but I can see only left, right, or rear downsun becuase I cannot see taiffic light, exp: downsun at 5pm, I must leave at before 3pm for front downsun, if downsun rear, i must leave before 4:30pm to home, but no more I lost Driver no more, I am sad!

Sorry you lost your drivers license. I do drive during the daytime, but one darkness falls I do not drive.

 

[Babyblue]

I can see shadows. Normal shadows.

I'm not sure of what type of shadows you are talking about.

 

[rhr]

Shadow Blind that some Legelly-Blind, RP, Usher's Syndrome, cannot look face, shopping, walk, light or sun point to eye mean they see like light blind, use cap or hat, off light or sun, they can see without light, I can see VP with dark wall, some white wall, I can't see face, I am blind-shadow, I say need dark wall, I can see VP, also some read computer black Background or CC but white backbround, no CC, Subtitle/SHD, they are shadow blind

I can see shadows. Normal shadows.

I'm not sure of what type of shadows you are talking about.

 

[Babyblue]

I understand what you are saying now.

I'm the opposite. I can see well in a bright lit area. Darkness is what I can not see in.

Now if the sun is in my face glaring, then I can not see at all due to the glare. Most visual people can not see in a glare.

 

[rhr]

you got, smile

I understand what you are saying now.

I'm the opposite. I can see well in a bright lit area. Darkness is what I can not see in.

Now if the sun is in my face glaring, then I can not see at all due to the glare. Most visual people can not see in a glare.

 

[Pinky]

I am Usher's Syndrome Type II but born I am deaf, i can see dark until I was 12 stop bike, but I can walk but not run until 25 age, I can driver without dark, I stop Driver, I was 36 age, I still walk without cane right now, i use vitiem A 10,000 IU and C-Comdex 500ui that Doctor want me it, he from Maryland

My Parent read about Stem Cell, they call to HQ EYES Worlds at Boston and Maryland, Doctor said don't uUS/RP.se Stem Cell for oh well[/QUOTE]

Did you research about Stem Cell for blind to see??

Stem-cell deal raises hopes of finding cure for blindness - Times Online
Blind to be cured with stem cells - Times Online
Stem cell treatment for sight loss could be in use by 2012 - Scotsman.com News

RP and US are part of Retina. They can cure for sight loss to see. For example, If you're totally blind and not able to get stem cell to heal. In case, If I notice any vision loss. Then I will get retinal implant or stem cell. I have to wait until 10 more years later. Do you understand what I mean?

I am sorry about your lost the driver license. I never have a car in my whole life. I got diagnosed of usher syndrome when I was 15 years old. I got shock and cried so hard. I became depress. My husband and my mom said I am lucky to not drive because it's expensive on payment and gasoline. I really dislike to ride on a city bus in public. I have to deal with it.

I am still can ride on bike but my husband was concern about my vision problem. I got out of control with balance make me fell off many times. It was frustrate to me. I haven't ride on bike since last 2 years ago. I am going to get a CI to hear. It will help me to balance and hear background. I always wear a helmet for ride on bike. The best for me to ride a bike on greenway ONLY! No streets or sidewalks because it's too crowd and small space. Hearing aids is not help me to hear better.

 

[Pinky]

I understand what you are saying now.

I'm the opposite. I can see well in a bright lit area. Darkness is what I can not see in.

Now if the sun is in my face glaring, then I can not see at all due to the glare. Most visual people can not see in a glare.

The best to wear a sunglasses to protect your vision from bright sunlight. I have experience with bright sunlight on my face when I don't wear a sunglasses. I came in the house. I can't see anything with color change from sunlight and flashlight or camera glare on my eyes. I closed my eyes to clear up the color blue and green. It's bother me! I can't see in the dark too. I stopped go to bar because it's dark for me.

 

[Pinky]

Shadow Blind that some Legelly-Blind, RP, Usher's Syndrome, cannot look face, shopping, walk, light or sun point to eye mean they see like light blind, use cap or hat, off light or sun, they can see without light, I can see VP with dark wall, some white wall, I can't see face, I am blind-shadow, I say need dark wall, I can see VP, also some read computer black Background or CC but white backbround, no CC, Subtitle/SHD, they are shadow blind

It's called blind spot. What kind of RP are you?

1 Early Retinitis Pigmentosa with blind spot called scotomas
2 Moderate Retinitis Pigmentosa 's spot get bigger and more delevoped until a ring-shaped blind spot is present.
3 Advance Retinitis Pigmentosa is central vision loss cone as tunnel vision

 

[Pinky]

I have a questions for you all with US/RP

Out of curiously, If you don't smoke a cigarette. When you go near to people whom smoking a cigarette to bother your eyes??

My eyes is too sensitive to go near the smoking cigarettes. I can't stand to smell stink! That's bother me a lot. I always avoid people whom smoker in front of me. I am not allow smoking in my house!

My dad died of lung cancer by smoking cigarette for 35 years. When he smoked a cig in the house. The white smoking coming to my nose and eyes. It's hurt me! I told him go outside. He said, "It's my house!" He never figure it out that I has RP. After he passed away in Feb. My doctor found it out that I has RP by vision field test.

I am tired to go over friend's house whom smoking in the house! It's annoying me. Nobody respect my wish. Grrrr!

What I can do?? Can you tell me about your experience?? I need to know the exact. It's common sense.

 

[Lissa]

I do not have RP or Usher's but my father also died from lung cancer, he was a heavy smoker and died aged 39 years. I hated all the smoke in the house, my brother had asthma and his asthma got better after my father died because all the smoke had gone.
I now hate smokers

 

[Pinky]

I do not have RP or Usher's but my father also died from lung cancer, he was a heavy smoker and died aged 39 years. I hated all the smoke in the house, my brother had asthma and his asthma got better after my father died because all the smoke had gone.
I now hate smokers

Wow! My dad was died at age 48 when I was 15. That's why I am anti-smoking for many reason. I lost my grandparents, aunt, and uncle because of smoking. I am wonder about RP and US's experience with sensitive eyes. It's bother me a lot! My husband is smoker. He want to be quit smoking. It take his time. I am tired of his all friends are smokers. Argh!

I've had tried smoking cigarette when I was teenager. I didn't like it! It taste terrible! Yuck! The white smoking came and hit on my eyes. It's hurt!
I can't smoking cigarette because I has RP/US. If I do smoke it will cause vision loss in center. My grandma had one blind in eye due to smoking for many years. I didn't want to be same as them. I'm proud to be non-smoker.

 

[Lissa]

yes i was almost 15 when he died. How does smoking affect people with RP/US?

I also went through a phase when I was 15/16 for a few weeks to smoke and after a while I stopped cos I hated it also

 

[Babyblue]

I also wear my sunglasses clip ons, Or sunglasses that covers my glasses when I go outside.

 

[Pinky]

Check it out

Health effects of smoking - dangers of smoking

Medical Library | Medem.com

 

[JClarke]

Out of curiously, If you don't smoke a cigarette. When you go near to people whom smoking a cigarette to bother your eyes??

My eyes is too sensitive to go near the smoking cigarettes. I can't stand to smell stink! That's bother me a lot. I always avoid people whom smoker in front of me. I am not allow smoking in my house!

My dad died of lung cancer by smoking cigarette for 35 years. When he smoked a cig in the house. The white smoking coming to my nose and eyes. It's hurt me! I told him go outside. He said, "It's my house!" He never figure it out that I has RP. After he passed away in Feb. My doctor found it out that I has RP by vision field test.

I am tired to go over friend's house whom smoking in the house! It's annoying me. Nobody respect my wish. Grrrr!

What I can do?? Can you tell me about your experience?? I need to know the exact. It's common sense.

when the smoking goes near your eyes, did it water a little bit when you attempt to rub your eyes when it is being affected?

 

[Foxrac]

Out of curiously, If you don't smoke a cigarette. When you go near to people whom smoking a cigarette to bother your eyes??

My eyes is too sensitive to go near the smoking cigarettes. I can't stand to smell stink! That's bother me a lot. I always avoid people whom smoker in front of me. I am not allow smoking in my house!

My dad died of lung cancer by smoking cigarette for 35 years. When he smoked a cig in the house. The white smoking coming to my nose and eyes. It's hurt me! I told him go outside. He said, "It's my house!" He never figure it out that I has RP. After he passed away in Feb. My doctor found it out that I has RP by vision field test.

I am tired to go over friend's house whom smoking in the house! It's annoying me. Nobody respect my wish. Grrrr!

What I can do?? Can you tell me about your experience?? I need to know the exact. It's common sense.

I don't have any problem when go in smoking room or any zone is heavily smoking, such as my workplace and it doesn't make any different.

I had been smoking before at several time and it was okay but just weird flavor in my breath.

Smoking has nothing with RP or US, you just have different sensitivity in your eye like some people has same problem as well.

 

[Foxrac]

I was diagnosed with US at twice, one was in 1994 and doctor don't find anything is wrong in eyes and other in 2000, doctor just found out after took visual test but still underdiagnosed, it's very difficult to make confirm until I just find anything is wrong in eyes in later time, also I don't have difficult time to see at night or find any problem, except for floaters, it isn't part of US but it was caused by weak retina due overdose of vitamin A and heavily play in sport and it would take about 10 years for floaters to be disappear. After that, I was fought with my parent and stop to take vitamin A, however I could take vitamin A at less than daily value or eat food that has high vitamin A, such as carrot and it's safer due natural.

I'm frequently driver at night and don't have any problem either.