Meeting a Deafblind person in real life

Pinky said:
Do you mean it called Usher Syndrome as Retinitis Pigmentosa?
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I am not sure which list of vision conditions apply to my friend's vision. There are the several lists of vision conditions. You can say that she has usher syndrome since she is deaf and has loss of vision.
 
Frisky Feline said:
I am not sure which list of vision conditions apply to my friend's vision. There are the several lists of vision conditions. You can say that she has usher syndrome since she is deaf and has loss of vision.
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Okay. How old she started to have loss of vision? What kind of disease does she have? I has usher syndrome type with profound hearing loss since I was born.
 
Pinky said:
Okay. How old she started to have loss of vision? What kind of disease does she have? I has usher syndrome type with profound hearing loss since I was born.
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Oh. I understand. She was born with Usher Syndrome and profoundly deaf. When She gets older and her vision is getting worse. She decided to go to the Helen Keller center for few years. From my understanding, according to her mother told me that she will get blind. But right now she's 38 years old and still have some vision. I think you are right it's usher syndrome but I do not know what type. Oh, I know the guy who I went to same school that he now is a well known as a JAG entertainer. He has an usher syndrome type 1. He's an awesome guy. You can find him on FB.
 
Frisky Feline said:
Oh. I understand. She was born with Usher Syndrome and profoundly deaf. When She gets older and her vision is getting worse. She decided to go to the Helen Keller center for few years. From my understanding, according to her mother told me that she will get blind. But right now she's 38 years old and still have some vision. I think you are right it's usher syndrome but I do not know what type. Oh, I know the guy who I went to same school that he now is a well known as a JAG entertainer. He has an usher syndrome type 1. He's an awesome guy. You can find him on FB.
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It mean she is type one. I hope not get blind at age. I'm 28 years old now. I am still taking Vitamin A supplement to postpone the blind in the future. Now, I can't take vitamin A supplement during pregnancy. I'm taking Omega 3 DHA now. If my vision get worse and consider to get stem cell to cure my retina disease or get retinal implant.
 
Pinky said:
It mean she is type one. I hope not get blind at age. I'm 28 years old now. I am still taking Vitamin A supplement to postpone the blind in the future. Now, I can't take vitamin A supplement during pregnancy. I'm taking Omega 3 DHA now. If my vision get worse and consider to get stem cell to cure my retina disease or get retinal implant.
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Oh, yes that makes sense to take a vitamin A for vision. Like carrots have high vitamin A that i often heard, " good for your eyes". Taking vitamin A is a good idea to delay the loss of vision. I have been around a several people who have usher syndromes during my college year ( gallaudet). It seems to me that it's too common for deaf people with usher syndrome.
 
sablescort said:
<---- did meet a few DB's myself even dated one. It was really interesting how they can handle being both deaf and blind. When I took my db date to deaf bowling league as fans most were afraid try communicate with her. I kept tell em go ahead go ahead she wont bite but most didnt feel comfy around a DB.
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I was invited to a Deaf social and hope people will feel okay with communicating with me. There will be one other DB person there (the guy I met).
 
I am deafblind myself. I am also very active in community and I am not afarid to be out in public regaedless of my vision. I have many DB friends besides deafies and hearing friends. Minnesota have strong DB community besides Seattle and NYC.
 
racheleggert said:
I am deafblind myself. I am also very active in community and I am not afarid to be out in public regaedless of my vision. I have many DB friends besides deafies and hearing friends. Minnesota have strong DB community besides Seattle and NYC.
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Amen!
 
Frisky Feline said:
Oh, yes that makes sense to take a vitamin A for vision. Like carrots have high vitamin A that i often heard, " good for your eyes". Taking vitamin A is a good idea to delay the loss of vision. I have been around a several people who have usher syndromes during my college year ( gallaudet). It seems to me that it's too common for deaf people with usher syndrome.
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Yes! That is why I'm eating carrot and drink V8 Splash with vitamin A. I know about usher syndrome attended to Gallaudet and RIT/NTID. My friends told me about this.

I am tired of not able to drive and not want to bother my husband take me many places whatever I want. In my hometown is pretty suck because it's not bigger city and not have subway, transportation and metro. My husband and I want to live in suburbs like Phoenix, Chicago, NYC, Seattle, Los Angeles, SF and other cities. In NYC is very expensive to live.
 
racheleggert said:
I am deafblind myself. I am also very active in community and I am not afarid to be out in public regaedless of my vision. I have many DB friends besides deafies and hearing friends. Minnesota have strong DB community besides Seattle and NYC.
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This is true, actually a group that I attend frequently has many deaf blinds, being from Minnesota as well.
 
herewego said:
This is true, actually a group that I attend frequently has many deaf blinds, being from Minnesota as well.
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Turns out the DB person I met in person is really good friends with one of the DB people I know from a DB listserv. Guess the DB wold is pretty small after all. :P
 
CJB said:
Turns out the DB person I met in person is really good friends with one of the DB people I know from a DB listserv. Guess the DB wold is pretty small after all. :P
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I guess the degree of blindness is questionable for many, legally blind or extremely limited vision. I know some people who are legally blind meaning they can't drive, but can see well enough to walk or bike around just fine. Profound deaf blind's yes, I think it is pretty rare, deaf with a degree of blindness much more common I would think. As legally blind is much more common and bad eyesight hardly uncommon even.
 
Hi there!, I am visually impaired too (Rebulla Syndrome). My vision little bit blurry right now and soon going to see eye doctor on jan 12th. It's Glamouma Disease causing to get blind in the future.

My vision field around 38 degress (legally blind as doc signed on documents).
 
herewego said:
I guess the degree of blindness is questionable for many, legally blind or extremely limited vision. I know some people who are legally blind meaning they can't drive, but can see well enough to walk or bike around just fine. Profound deaf blind's yes, I think it is pretty rare, deaf with a degree of blindness much more common I would think. As legally blind is much more common and bad eyesight hardly uncommon even.
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I think most Deafblind people are DB from Usher's too and it's really uncommon to have unrelated causes for deafness and blindness.

On another note, the DB man I met was totally deafblind, which even in the DB world is uncommon. I think it's about 3% of Deafblind people that are totally no light perception/profound hearing loss.
 
CJB said:
I think most Deafblind people are DB from Usher's too and it's really uncommon to have unrelated causes for deafness and blindness.

On another note, the DB man I met was totally deafblind, which even in the DB world is uncommon. I think it's about 3% of Deafblind people that are totally no light perception/profound hearing loss.
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I do . It is not that uncommon.
 
CJB said:
I think most Deafblind people are DB from Usher's too and it's really uncommon to have unrelated causes for deafness and blindness.

On another note, the DB man I met was totally deafblind, which even in the DB world is uncommon. I think it's about 3% of Deafblind people that are totally no light perception/profound hearing loss.
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How does one go about determining whether they have Usher's or not. I finally found all of my medical records regarding my hearing tests and all from childhood. Firsts tests indicate a sensorineural loss, mild. It had progressively gotten worse and then other issues were found as well after I lost all hearing. At 16 I got my first pair of glasses and my eyes have gotten worse over the years with new prescriptions every 6-12 months. I have what was termed a 2nd pupil in both eyes and as it gets larger, my sight gets worse. I am overdue for an eye test (no insurance) and my glasses are not strong enough again. I got these in Missouri right before we left, so I got them i May 2009.
 
I guess that's basically a :slap: to me then.

Medical dr or whar?
 
KristinaB said:
I guess that's basically a :slap: to me then.

Medical dr or whar?
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blood test, I believe. and then further diagnosis by different specialists for eyes and hearing to see the extent of damage. Pinky has Usher's Syndrome.
 
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