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• USHER SYNDROM
• Posted: 2007-10-21 20:12:43 By VICKI B
• HI MY NAME IS VICKI, I WOULD LIKE TO MEET OTHER PEOPLE THAT HAVE USHER SYNDROM. I LIVE IN OHIO. LOOKING FOR CHAT ROOM OR EMAIL FRIEND THAT I CAN COMMUNICATE WITH. PLEASE LET ME KNOW. THANK YOU VICKI
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• USHER SYNDROM
• Posted: 2007-10-21 20:11:39 By VICKI B
• HI MY NAME IS VICKI, I WOULD LIKE TO MEET OTHER PEOPLE THAT HAVE USHER SYNDROM. I LIVE IN OHIO. LOOKING FOR CHAT ROOM OR EMAIL FRIEND THAT I CAN COMMUNICATE WITH. PLEASE LET ME KNOW. THANK YOU VICKI
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• USHER SYNDROM
• Posted: 2007-10-21 20:11:38 By VICKI B
• HI MY NAME IS VICKI, I WOULD LIKE TO MEET OTHER PEOPLE THAT HAVE USHER SYNDROM. I LIVE IN OHIO. LOOKING FOR CHAT ROOM OR EMAIL FRIEND THAT I CAN COMMUNICATE WITH. PLEASE LET ME KNOW. THANK YOU VICKI
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• USHER SYNDROM
• Posted: 2007-10-21 20:11:02 By VICKI B
• HI MY NAME IS VICKI, I WOULD LIKE TO MEET OTHER PEOPLE THAT HAVE USHER SYNDROM. I LIVE IN OHIO. LOOKING FOR CHAT ROOM OR EMAIL FRIEND THAT I CAN COMMUNICATE WITH. PLEASE LET ME KNOW. THANK YOU VICKI
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• USHER SYNDROM
• Posted: 2007-10-21 20:10:26 By VICKI B
• HI MY NAME IS VICKI, I WOULD LIKE TO MEET OTHER PEOPLE THAT HAVE USHER SYNDROM. I LIVE IN OHIO. LOOKING FOR CHAT ROOM OR EMAIL FRIEND THAT I CAN COMMUNICATE WITH. PLEASE LET ME KNOW. THANK YOU VICKI
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• good hearing aids
• Posted: 2007-10-17 23:19:18 By Marisa P
• Have any of you who have worn analog hearing aids found a digital aid that you like? My brother is having problems finding one that he can hear well with. He doesn't have much eyesight left so he relies on the hearing. I am not much help because I haven't been wearing them as long so I adapted pretty well to the digital ones.
  
  Thanks.
  Marisa
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• Usher symposium in ?Omaha? ugh
• Posted: 2007-10-16 10:26:10 By andrew b
• It really **** that so much research and these kind of symposiums happen in the midwest where so few people live. It'd really make a lot more sense to have these symposiums and such research in places other than the midwest like NY or LA. Maybe I'm showing my distaste for the midwest, but brrr and wow, is there anything here other than corn?
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• New group
• Posted: 2007-10-14 06:31:59 By Morgan P
• Just wondering if anyone wanted to a group I found on google groups under usher syndrome. There's not much activity right now, but I thought with a little word of mouth perhaps some people would start to join and get some good discussions going, that is of course in addition to this already great message board.
  
  Thanks,
  
  Morgan
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• Ushers and Cone-Rod Dystrophy
• Posted: 2007-10-11 13:47:14 By Peter S
• I have just received a call from my sons doctor telling me he has Con Rod Dystrophy and not Retinitis Pigmentosa. I asked if this clears him of possibly having Ushers Syndrome and the doctor replied no. I have done some online research but can't find a link between the two. Anybody able to help me on that?
  
  Thanks,
  Pete
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• Retinal Specialist in Chicago???
• Posted: 2007-09-27 19:11:05 By Luis M
• 
  Hi Everyone,
  
  Curious to know, can anyone recommend an excellent retinal specialist in Chicago? I have seen Dr. Gerald Fishman, and would like to explore other options. I suppose what got me to this point is I think Dr. Fishman's practice has grown too large/commercial, currently run by researchers. (In fact, one of his researchers became so aggressive- calling me no less than a dozen times to recruit me for some research. Just to get her to stop calling mee, I told her I was not available via e-mail. Boy! you should have seen quickly she stopped dealing with me, so obvious she wanted me as a lab specimen, not as a person with feelings, etc..). The researcher's behavior definitely swayed my decision (been thinking about it for awhile) to change retinal specialists. In sum, I make it a point to avoid seeing a specialist who relies upon too many researchers to do the work, thus hindering ability to develop a trusting patient-doctor relationship with the point specialist. And yes, I am absolutely petrified of being "venus fly trapped" into becoming a lab rat for researchers, under the pretense of seeing a specialist.
  
  I am strongly considering Boystown in Omaha, Nebraska based upon several interactions with them within the last two years and a friend's experience (she is based out Chicago as well). But before I proceed with Boystown, I wanted to ask anyone on the board if they can recommend anyone else in the Midwest. I understand Dr. Michael Grassi (University of Chicago) is on the cutting edge...anyone have any experience with him? Any suggestions will be greatly appreciated. Also, for faster response and possible discretion, please send an e-mail to nmmontal@uchicago.edu.
  
  Thank you,
  
  Nicole
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• Hard question about Ushers2
• Posted: 2007-09-24 10:35:22 By Jessica R
• I am hoping that someone with Ushers type two can answer some questions for me. My 7 year old son was just diagnosed with Usher's type II. He has mild/moderate hearing loss. I am wondering does the hearing loss typically stay the same or does that progress as well as the RP? He does not know any sign language and uses bilateral hearing aids quite well. He is mainstreamed and an accelerated reader in second grade. I am wondering if we should be looking at coclear implants? Also, and a real big question, is that my husband and I don't know how or when to share this diagnosis with him?? He now has mild night blindness that he doesn't even notice yet. I am curious as to other peoples experiences with diagnosis. Thanks for all your help with this.
  
  Jessica (Jacobs Mom)
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• Stem cell research
• Posted: 2007-09-21 08:16:13 By Mani I
• Have any of you heard about this one?
  
  http://www.stemcellpharmainc.com/Default.htm
  
  If so, what do you think of it?
  
  Thanks,
  mani
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• Ayurvedic treatement in India
• Posted: 2007-09-09 20:20:19 By Mani I
• I have Usher Syndrome Type II and my eyesight is pretty bad right now. I am a software engineer and find it very difficult to work these days.
  I found out about this ayurvedic treatment in India that purports to stop further degeneration of RP. Check out http://www.sreedhareeyam.com/
  
  I met with one of the doctors in Bombay(where I am from but now I am settled in the US) and he claims that their treatment can stop the degeneration and in some cases can improve vision by 20%.
  
  I am wondering if any one of you know abnout this, or have had any experience with this. Please let me know before I take this plunge.
  
  Thanks
  mani
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• Does Usher type 1 cause complete blindness?
• Posted: 2007-08-24 19:32:58 By Joanna M
• Does Usher type 1 cause complete blindness or is it just the peripheral vision and night blindness that is lost? If anyone could answer this I would really appreciate it. I have read on some internet websites regarding Ushers that it causes complete blindness but then I did read on another website that it was just the peripheral vision that is lost. I would greatly appreciate any input.
  Thank you and God Bless you all,
  Joanna
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• 28 mth old with ushers...
• Posted: 2007-08-23 17:21:59 By Joanna M
• Hello there! It is so wonderful to be able to speak with people who are experiencing the same thing. My beautiful angel was recently diagnosed with Ushers syndrome. He had an ERG completed at Bascom Palmer in Miami where the dr diagnosed him with such. He is 28 months old. My husband and I have experienced a horrific 2 years trying to get our son diagnosed. We had seen 3 neurologists. The first one told us that she believed he had a degenerative brain condition as did the 2nd neurologist. We thought our baby was dying, so to find out that he has Ushers is a huge relief to us. We finally found a neurologist who pretty much told my husband and I that on the 2nd visit with him that he believed our son had Ushers. We do believe that he has the type 1 form as he has severe balance problems, rarely sits and is not walking yet. Profoundly deaf, can hear beyond 120 on the decibel scale! Nystagmus and problems with vision. He is a smart little boy and for so long some people thought (still think) he is cognitively challenged. This causes anger in me greatly. I think that the general public can be so ignorant and dumb. I get plenty of people who stare at my son like he is a circus show because the poor little guy can not hear, see that great and has balance issues! If there are any mothers out there who would like to write back that would be greatly appreciated, or anyone!
  Take care and god bless you all.
  Joanna
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• Hi, I'm new to this
• Posted: 2007-08-06 23:09:17 By Audrey C
• Hi, I haven't been on this before but been across it many times. I am writing a paper on Usher and trying to figure out what government or who funds the studies for Usher. IF anyone knows I would love to know! Thanks
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• Hi, I'm new to this
• Posted: 2007-08-06 23:09:05 By Audrey C
• Hi, I haven't been on this before but been across it many times. I am writing a paper on Usher and trying to figure out what government or who funds the studies for Usher. IF anyone knows I would love to know! Thanks
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