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• New diagnosis
• Posted: 2009-06-08 12:44:30 By Scott H
• Hello,
  I was wondering if anyone else has had a similar experience. Up until about a week ago, I always thought I had RP. I became legally blind almost four years ago in my early 30s. I have known about my eye disease since age 9. Last fall, my ears started ringing and my wife noticed I wasn't hearing everything the way I used to. Last week, I saw an ENT at the U of MN Hospital who specializes in working with Usher Syndrome. After checking out my audiology results and some exam and other tests, he said I have a type of Ushers. He didn't seem overly concerned about it and didn't seem to think I should be either. He suggested that I get my hearing checked annually to check progression.
  Has anyone else out there had the vision loss before the hearing loss? How bad has the hearing loss been? I am a little bit in shock here. I thought I understood my condition and now have to learn a new disease.

• Posted: 2009-06-16 19:53:20 By Darran Z
• Usher Syndrome is nothing more than RP with hearing loss. I do not understand your question. Since you said you had RP and hearing loss, then youa re just getting a name for it. Nothing changes really, as far as prognosis is concerned.
  
  I would suggest reading up on Usher so you know what it is. Look at Dr. Bill Kimberling's site at Boystown National Research Hospital. If you Google, National Center on the study and treatment of Usher Syndrome, you'll find the Boystown site.
  
  Another option, is to contact that ENT doctor you mentioned at the U of MN. Ask them if they know Dr Sandra Davenport. She is retired but used to work there as well, and has done alot of studies on US.
  
  Darran

• Posted: 2009-07-12 23:04:36 By Maria P
• Scott,
  It is more common, perhaps, to be diagnosed with hearing loss first but there are cases where the RP progresses much quicker. It really depends on the type of Ushrs you have.
  
  So, yes, we have to deal with vision and hearing loss but it can be done!
  Good luck,
  Marisa