Who Have Usher Syndrome type one?

If it was blood, i'd notice some blood coming out of my eyes, but it wasn't
 
Pinky678 said:
Do you mean bad blood in eyeballs?? I am trying to research for Stem Cell will heal RP and US. But in China is legal for stem cell.
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It bled in the back of my eye and suddenly I could not see from right eye. Later when it cleared out the vision was messed up permanently because there is a scar on the edge of the macula. The doctor said if the scar was just a little different place I wouldn't be able to see at all from my right eye.

That is all I understand about it.
 
What if you born hoh and suddenly become deaf in late teens and start to have difficulity seeing in night time, at first when I was about 16 it was like very small black spot in middle of my vision "field" I can't see object looking straight at it but could if I look at it with my "side" view of eye and now black spot seem like it got bigger I can't see anything only very edge of my vision "field" only in very dark place if it have enough light I can see fine. But tiny light from alarm clock, cable box, dvd player power button when its on it show blue light, etc small light wasn't enough anymore it need to be nightlight kind bright light to see something.

And I get eye strains fatigue when I'm driving in day time for longer than 20 minutes. That's only thing I have right now. What you think?
I did went about year ago for new glasses she looked in my eyes and said she don't know why she don't see anything wrong with eyes and I need same prescription for reading glasses but I can't help but feeling something wasn't right.

Do anyone have that black spot in middle of your vision in dark? I thought it supposed to become tunnel-like not doughnut-like? Weird maybe I'll get real eye doctor not glasses kind people someday soon. Or do you need genetic test?
 
Yeah, I know what you mean. When I was teen. When I was at outside and lay down on cushion and view the sky. I noticed the black spot moving around in my vision. I thought it alike a bees and bug. It's bother me. I closed my eyes to make black spot go away. When I was at school. I was sitting down on the desk and read the book. I noticed black spot in my view. It's bother me. I can't stand it. I didn't make it with test on my grade. It's frustrated to me.

I don't have black spot for long times. It's weird. Maybe I took a Vitamin A to rid of black spot. I guess. Yeah, you have to go Ophthalmologist. You will get a vision field test. I really dislike the drops into my eyes to make a open dilate. I have to go ophthalmologist for checkup once time every years. I can't see the dark at night either.

Yeah, I had a genetic test. I have a retina in my gene family. It from my parent's genetic family cause I was born deaf and usher syndrome.

You can ask me any questions.




SkullChick said:
What if you born hoh and suddenly become deaf in late teens and start to have difficulity seeing in night time, at first when I was about 16 it was like very small black spot in middle of my vision "field" I can't see object looking straight at it but could if I look at it with my "side" view of eye and now black spot seem like it got bigger I can't see anything only very edge of my vision "field" only in very dark place if it have enough light I can see fine. But tiny light from alarm clock, cable box, dvd player power button when its on it show blue light, etc small light wasn't enough anymore it need to be nightlight kind bright light to see something.

And I get eye strains fatigue when I'm driving in day time for longer than 20 minutes. That's only thing I have right now. What you think?
I did went about year ago for new glasses she looked in my eyes and said she don't know why she don't see anything wrong with eyes and I need same prescription for reading glasses but I can't help but feeling something wasn't right.

Do anyone have that black spot in middle of your vision in dark? I thought it supposed to become tunnel-like not doughnut-like? Weird maybe I'll get real eye doctor not glasses kind people someday soon. Or do you need genetic test?
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Pacman said:
Not always, some deaf people with US (either 1 or 2) don't have vision issue at after adult, even some of them don't have any difficult to see in dark in later, never in some cases, it's depends on each individual.
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You are right... i was born HOH... my visions started failing at age of 9... i wore glasses... until I was about 40 yrs old i had both eye surgeries... and i can see better until few yrs later... i started cannot see anything at nights... then when I moved to California... I took driver license... I was BUSTED... so i cannot drive anymore... i can see during day time... but vision is like 27-32 inches TV.... I had to train myself.... but i cannot go outside alone walking... need friends to walk with me... my vision is not getting narrower yet... I am alomst 64... But i have cataracts right now...Dr said I need to wait until they are ripe enough to remove... it is not much change... i am doing alright... i trained myself to look up and down.. also sideways...
 
SxyPorkie said:
. I had to train myself.... but i cannot go outside alone walking... need friends to walk with me... my vision is not getting narrower yet...
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Yes, you can. Using a cane or guide dog, even a totally blind person can walk outside in any lighting condition- certainly, a partially sighted person can.

Reach out to local support, get orientation and mobility, and get back to enjoying your life. Independence is.. so, so, so essential. Fight like hell for it.
 
yes alser, independence is essential....and a lot of times it is the things like Braille/guide dog/cane travel etc that make someone be independant....Maybe they should have special programs through the deaf educational programs where kids at risk for vision issues (like Ushers) get blind/low vision training.
 
deafdyke said:
yes alser, independence is essential....and a lot of times it is the things like Braille/guide dog/cane travel etc that make someone be independant....Maybe they should have special programs through the deaf educational programs where kids at risk for vision issues (like Ushers) get blind/low vision training.
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In general, people who are -going- to develop a visual condition that leads to legal blindness (even if they don't already have any significant visual impairment) qualify for rehab programs.

There is, within the US, one center for deafblind people (helen keller national center)- but, I don't really suggest them all too much. Their perspectives about the potential of deafblind people to be independent does not agree with the reality..

So, while I in general disagree with the NFB for it's lack of inclusion re: deafblind people, I do suggest their centers. No, they're not catered towards the needs of Deafblind people, but on the flip side, they have a genuinely positive view on the limitless life someone can enjoy without sight.
 
I am legal blind. I don't have a dog guide, braille and cane. I don't need it. I am still afraid to get blind. Do not preach on me. My other old VR forced me to go Helen Keller College in NY. I didn't like it. She can't force me to do. It's my decide. I don't like my old school and classmates rejected me. I don't want they spread a rumors over the world about my vision impaired.
 
~♥~Pinky~♥~ said:
I am legal blind. I don't have a dog guide, braille and cane. I don't need it. I am still afraid to get blind. Do not preach on me. My other old VR forced me to go Helen Keller College in NY. I didn't like it. She can't force me to do. It's my decide. I don't like my old school and classmates rejected me. I don't want they spread a rumors over the world about my vision impaired.
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If you are legally blind and think you don't need a cane or braille, you're in the serious land of denial.

I assume you're in Michigan? Please, attend a meeting of your local NFB chapter. You can find listings at Local Chapters - National Federation of the Blind of Michigan NFB (if you're not in Michigan, just give me your state and I'll find it for you.)

I will quote part of an article for you.

"It has been said that, in the world of the blind, the one-eyed man will be king. The inference here seems to be that the more sight a person has, the more capable he is. This is a widely-held but very damaging and false idea. How ironic it is that many partially sighted people who consider themselves superior to those who are totally blind are in many respects less capable as a direct consequence of coming to rely too much on their partial sight. Rather than making of them a king in the world of the blind, partial vision can make of them that very inferior being, which they supposed they had avoided by possessing partial vision."

The first suggestion on when to stop relying on low vision (and choose/accept blindness) is:

"Stop relying on low vision and on low-vision aids the moment you find yourself clinging to them as a passport to normality."

Sighed is not better than blind. And to cling to that part of you that you WILL lose is only going to disappoint you. You ARE blind- as blind as me, as blind as dreama, as blind as millions of others. Having sight doesn't mean you're not blind.

And I know it seems scary and impossible and a million other words, but you CAN learn to love that part of you. Because when you do, you might just realize that to function as a totally blind person might leaves you FUNCTIONING a lot more than you ever were while clinging to your remaining vision.

So I beg you, take the first step. I'm not asking you to love it today, but I'm asking you to take the first step towards that. Reach out to competent and capable blind people- because you're blind too! Being blind is not shameful, it is nothing that can or should be made rumor of. There is no good reason to be ashamed of or deny the truth!
 
No, I am from in Indiana. I went to "The League for the Blind and Disability" Yeah, I admit that I am in denial to have a usher syndrome. I had a bad experience at school in past. The kids were mean and picked on me. I had a bad experience at old employee. I was born with usher syndrome. My vision never change. Did you read my posts scroll down? I have other thread of RP and Usher Syndrome. You will know what I am talking about.

My vision is 20/40 still. It never change it. I can't see at night. I want you to read my other posts and thread. You can tell me what do you think?

Thank you for debate with me! It's great articles! :)

Aleser said:
If you are legally blind and think you don't need a cane or braille, you're in the serious land of denial.

I assume you're in Michigan? Please, attend a meeting of your local NFB chapter. You can find listings at Local Chapters - National Federation of the Blind of Michigan NFB (if you're not in Michigan, just give me your state and I'll find it for you.)

I will quote part of an article for you.

"It has been said that, in the world of the blind, the one-eyed man will be king. The inference here seems to be that the more sight a person has, the more capable he is. This is a widely-held but very damaging and false idea. How ironic it is that many partially sighted people who consider themselves superior to those who are totally blind are in many respects less capable as a direct consequence of coming to rely too much on their partial sight. Rather than making of them a king in the world of the blind, partial vision can make of them that very inferior being, which they supposed they had avoided by possessing partial vision."

The first suggestion on when to stop relying on low vision (and choose/accept blindness) is:

"Stop relying on low vision and on low-vision aids the moment you find yourself clinging to them as a passport to normality."

Sighed is not better than blind. And to cling to that part of you that you WILL lose is only going to disappoint you. You ARE blind- as blind as me, as blind as dreama, as blind as millions of others. Having sight doesn't mean you're not blind.

And I know it seems scary and impossible and a million other words, but you CAN learn to love that part of you. Because when you do, you might just realize that to function as a totally blind person might leaves you FUNCTIONING a lot more than you ever were while clinging to your remaining vision.

So I beg you, take the first step. I'm not asking you to love it today, but I'm asking you to take the first step towards that. Reach out to competent and capable blind people- because you're blind too! Being blind is not shameful, it is nothing that can or should be made rumor of. There is no good reason to be ashamed of or deny the truth!
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~♥~Pinky~♥~ said:
No, I am from in Indiana. I went to "The League for the Blind and Disability" Yeah, I admit that I am in denial to have a usher syndrome. I had a bad experience at school in past. The kids were mean and picked on me. I had a bad experience at old employee. I was born with usher syndrome. My vision never change. Did you read my posts scroll down? I have other thread of RP and Usher Syndrome. You will know what I am talking about.

My vision is 20/40 still. It never change it. I can't see at night. I want you to read my other posts and thread. You can tell me what do you think?

Thank you for debate with me! It's great articles! :)
Click to expand...

First: legal blindness is not defined, in the context of RP, with snellen acuity- rather, field of vision. Within the context of Deafblindness, one need NOT be even legally blind to be deafblind- the combined effects, producing that inability to compensate only using another sense, can mean that a person neither severely/profoundly deaf nor legally blind can be deafblind.

Second: your vision will change. Again, back to the denial. If you are willing to let that denial limit how well you can live (to quote you, "i can't see at night"- does this ever stop you from going out to walk alone at night? going to a theater for fear you'll trip over a step?) If you just cannot get over this reality, it's time to see a disability-positive therapist.

Third: NFB - IN Resources

It's not a debate. I'm trying to let you see that there IS a better life to be enjoyed and that you are ignoring it for fear of acknowledging that you're different.
 
Thank you for link. I never go outside for walk alone at night. I'm afraid to go. I have my dog and let her go out pee. I am using her leash with me go outside. But not walk around. Just let her pee then come back inside. I live in apartment. My husband is support me when he is guide me walk through the dark.

Really? You mean I am not a legal blind yet? Did you know Retina have cure? Do you have usher syndrome? I am wonder.

Aleser said:
First: legal blindness is not defined, in the context of RP, with snellen acuity- rather, field of vision. Within the context of Deafblindness, one need NOT be even legally blind to be deafblind- the combined effects, producing that inability to compensate only using another sense, can mean that a person neither severely/profoundly deaf nor legally blind can be deafblind.

Second: your vision will change. Again, back to the denial. If you are willing to let that denial limit how well you can live (to quote you, "i can't see at night"- does this ever stop you from going out to walk alone at night? going to a theater for fear you'll trip over a step?) If you just cannot get over this reality, it's time to see a disability-positive therapist.

Third: NFB - IN Resources

It's not a debate. I'm trying to let you see that there IS a better life to be enjoyed and that you are ignoring it for fear of acknowledging that you're different.
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~♥~Pinky~♥~ said:
Thank you for link. I never go outside for walk alone at night. I'm afraid to go. I have my dog and let her go out pee. I am using her leash with me go outside. But not walk around. Just let her pee then come back inside. I live in apartment. My husband is support me when he is guide me walk through the dark.

Really? You mean I am not a legal blind yet? Did you know Retina have cure? Do you have usher syndrome? I am wonder.
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No, I did not mean that you aren't legally blind.. at all.

And no, let me say this as many times as possible. RP DOES NOT HAVE A CURE. 40 years, a few laws, 300 clinical trials? Maybe. Are you going to curl up and die until then?

I don't have usher syndrome. My deafness and blindness are unrelated.
 
Hi Pinky,
I'm sorry to hear about your problems. I would listen to Aleser. I am Deafblind. Outdoors I am totally deafblind now. In doors where lighting conditions can be controlled I still have a little bit of useful vision. I am also in favor of the NFB aproach. If your husband has to guide you and you are afraid to go out at night that means you do have a problem.
 
Really? Are you full blind? I am sorry. I can see the lights with pole at night. I can walk without need guide. It depend on light and dark shadow. If it's dark shadow. I can't see. How did you become deaf and blind?

If you are interesting to read my other thread for information.

http://www.alldeaf.com/general-health/51921-anyone-have-retinitis-pigmentosa-usher-syndrome.html

dreama said:
Hi Pinky,
I'm sorry to hear about your problems. I would listen to Aleser. I am Deafblind. Outdoors I am totally deafblind now. In doors where lighting conditions can be controlled I still have a little bit of useful vision. I am also in favor of the NFB aproach. If your husband has to guide you and you are afraid to go out at night that means you do have a problem.
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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 use Stem Cell for US/RP. oh well


~♥~Pinky~♥~ said:
Do you mean bad blood in eyeballs?? I am trying to research for Stem Cell will heal RP and US. But in China is legal for stem cell.
Click to expand...
 
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