new, have usher's syndrome.

Discussion in 'Introduce Yourself' started by deafjellyfish, Jan 17, 2008.

  1. deafjellyfish

    deafjellyfish New Member

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    i've been lurking forever. i'm new, from nj, proficiently deaf in left ear, moderate/severe in right. i was diagnosed with ushers' syndrome early last year. my hearing has just faded away slowly over time. i do not wear aids, i've been speech reading all of my life mostly and learned asl and see.
    i'm in a relationship (partner is hearing) and i'm very happy. just looking for support, advice, thoughts.
    i work in the hearing world (only deaf employee) and that can get frustrating!

    that's it for now. :ugh3:
     
  2. steph9700

    steph9700 New Member

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    I will be (so I am told so far) that I will be only deaf student in classes I am going into for clinical lab technician in the fall. I know where you are coming from. Hope everything is going well for you! Welcome to AD! Stephanie
     
  3. JClarke

    JClarke AD Veteran Premium Member

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    Welcome to AD -- there are many members on AD'ers that has Ushers Sydrome. Enjoy your stay here! :D
     
  4. SxyPorkie

    SxyPorkie New Member

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    I also have Usher's Sydrome... It is no big deal... only problem is that i cannot walk outside during the night..... thats all... i learn to look both sides and up and down... you have to train yourself.. you will be fine...
     
  5. TweetyBird

    TweetyBird ... Premium Member

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    :welcome: here and enjoy AD! :D
     
  6. shel90

    shel90 Audist are not welcome Premium Member

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    :welcome: to AD! Hope you enjoy it here. :)
     
  7. deafjellyfish

    deafjellyfish New Member

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    What kind of information did you receive when you were diagnosed with usher's? How is your hearing? Vision?
    I don't know anyone with Usher's personally, I do alot of reading on it and just wanted to get some support or advice.
    Do you work as well?
    Thanks.:eek3:
     
  8. Hear Again

    Hear Again New Member

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    Welcome to AD! :)

    I'm totally blind (from birth) and had progressive hearing loss since age 3 (although my former hearing aid audiologists think it may be congenital).

    My blindness was caused by ROP (retinopathy of prematurity) and my hearing loss caused by a number or factors including prematurity, ototoxic drugs given to me while in the neonatal intensive care unit, childhood ear infections, antibiotics and years of untreated allergies.

    Hope you enjoy your stay here! Anytime you'd like to chat feel free to send me a PM anytime. :)

    P.S. If you are looking for resources, let me know. I have plenty of information I can share with you -- one of them being an e-mail list for people with Usher's.
     
  9. Babyblue

    Babyblue New Member

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    Hello! I'm in the process in finding out if I truly have Usher Syndrome type 2. I currently have bad night vision and some tunnel vision. And it is getting worse. I have been looking for a specialist to confirm this.. I'm in the process of making an Dr appt. to confirm it.

    So I am totally understand this situation, even though some people think it is no big deal. I do!! So I'm open to share with you about Usher, even though they have not truly diagnose me with it yet.

    Welcome to AD.
     
  10. EyesBlueDeaf

    EyesBlueDeaf New Member

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    I have several friends who get help through NJADB and HKNC. I think you need to go to NJADB first before you go to HKNC. They both are very good organizations.
    New Jersey Association for Deaf and Blind New Jersey Association of the Deaf Blind
    Helen Keller National Center for Deaf Blind Youths and Adults About HKNC
     
  11. deafjellyfish

    deafjellyfish New Member

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    yes, i am looking for resources and any information you may have on ushers' syndrome. that would be helpful! and appreciated.
    i would like to be on the email list for people with usher's as well.

    :deaf:
     
  12. Angel

    Angel ♥"Concrete Angel"♥ Premium Member

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    Did you check out General Health for threads related to "usher syndrome" ?

    http://www.alldeaf.com/general-health/


    Btw, welcome to Alldeaf and enjoy your stay here :) ...
     
  13. deafjellyfish

    deafjellyfish New Member

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    no i didn't but i will. thanks for the welcome and stuff!
     
  14. Lil_country_gal

    Lil_country_gal New Member

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    ~*WELCOME*~
    TO ALLDEAF!!!
     
  15. deafjellyfish

    deafjellyfish New Member

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    thank you for all the welcomes!! much appreciated!
     
  16. SxyPorkie

    SxyPorkie New Member

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    Usher's sydrome runs on my mother s side... i was 9 yrs old when eye specialist tested me and told me that i have it... and suggested me to go to Blind school to train myself... I did not go.... i learned on my own.... now i am 63 yrs old... now i cannot walk in the dark especially in the night.... so i have dim light every room so i can find my way around...use my vision more than normal people do....

    I worked.... at different jobs.. they even did not know i had it..... things went normally..... now i work part time with Domestic Violence for deaf... they know about my vision... they come and pick me up if it needs to be there during night... NO problem at all...
     
  17. deafjellyfish

    deafjellyfish New Member

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    I worked.... at different jobs.. they even did not know i had it..... things went normally..... now i work part time with Domestic Violence for deaf... they know about my vision... they come and pick me up if it needs to be there during night... NO problem at all...[/QUOTE]

    were you late deafened? i lost my hearing when i was 9 in my left ear, it had been gradual in my right over the years. my vision has deterioated as well. i am having alot of trouble driving at night and seeing in the dark, if i go for a walk or something. or if the house is completely dark.
    i turned 40 a few months ago and i'm noticing changes more since i've gotten slightly older. its upsetting, but a fact of my life.
    do you sign?
    your job must be tough at times, working in domestic violence. i wanted to get a job at the deaf school here in my state, but there had been a hiring freeze and its been impossible to get in.
    i would love to work with the deaf/blind, but i don't even know where to begin to find work in that field.
    thanks for sharing!
     
  18. SxyPorkie

    SxyPorkie New Member

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    were you late deafened? i lost my hearing when i was 9 in my left ear, it had been gradual in my right over the years. my vision has deterioated as well. i am having alot of trouble driving at night and seeing in the dark, if i go for a walk or something. or if the house is completely dark.
    i turned 40 a few months ago and i'm noticing changes more since i've gotten slightly older. its upsetting, but a fact of my life.
    do you sign?
    your job must be tough at times, working in domestic violence. i wanted to get a job at the deaf school here in my state, but there had been a hiring freeze and its been impossible to get in.
    i would love to work with the deaf/blind, but i don't even know where to begin to find work in that field.
    thanks for sharing!
    [/QUOTE]

    No... I was born HOH... my parents were deaf...I love my part time job working with Domestic Violence...it is big challenge...
     
  19. Babyblue

    Babyblue New Member

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    were you late deafened? i lost my hearing when i was 9 in my left ear, it had been gradual in my right over the years. my vision has deterioated as well. i am having alot of trouble driving at night and seeing in the dark, if i go for a walk or something. or if the house is completely dark.
    i turned 40 a few months ago and i'm noticing changes more since i've gotten slightly older. its upsetting, but a fact of my life.
    do you sign?
    your job must be tough at times, working in domestic violence. i wanted to get a job at the deaf school here in my state, but there had been a hiring freeze and its been impossible to get in.
    i would love to work with the deaf/blind, but i don't even know where to begin to find work in that field.
    thanks for sharing!
    [/QUOTE]


    I also don't drive at all at night. I will be turning 34 in Feb. I have notice trouble when I was younger and I thought it was because I wore glasses. Like I said I have not be diagnosed yet, but even though I'm not the type of person to diagnose myself...... I feel this is what I have.......I hope Aleser doesn't mind me mentioning his name. I'm sure that he would have the best information for you on this. He has helped me a lot in my circumstances.
     
  20. Aleser

    Aleser New Member

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    In regards to jobs working with people who are deafblind? (sorry, the topic is a little confusing to work through)

    Uh, if you (by this I mean the original poster) want to throw a PM my way, I could probably compile a few links for you when I get the time.

    If you mean general questions about deafblindness, the above still applies. I'm not an expert on Usher syndrome, but I can try and be of help.

    In any case, welcome to alldeaf!
     

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