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• i have a 9 year old girl
• Posted: 2008-02-21 19:47:26 By Diane B
• hello my name is Diane and i would like to talk to other parents who are going through the samething as i am

• Re: i have a 9 year old girl
• Posted: 2008-02-22 09:59:24 By Michelle W
• Hi Diane,
  
  Our daughter is 10. The retina specialist found 'flecks of pigment in the peripheral retina' and our daughter is night blind. She's scheduled for an ERG and a VF. We don't have an official diagnosis yet, but I'm trying to figure out what else this could be besides RP (haven't come up with any alternatives yet).
  
  Does your daughter have RP? When was she diagnosed? Was the official diagnosis given only after visual field tests and an ERG? What is your daughter's vision like?
  
  Thanks.
  
  Michelle

• Re: Re: i have a 9 year old girl
• Posted: 2008-02-22 11:51:40 By Diane B
• TO MICHELLE.
  HI MY DAUGTHER HAS LEBERS CONGENTAIL AMAUROSIS SHE WAS DIAGONSED WHESHE WAS 6 MTHS OLD.I AM DEALING WITH THIS FOR YEARS.THANKS FOR WRITING ME back where are you located.
  diane

• Re: Re: i have a 9 year old girl
• Posted: 2008-02-22 11:51:45 By Diane B
• TO MICHELLE.
  HI MY DAUGTHER HAS LEBERS CONGENTAIL AMAUROSIS SHE WAS DIAGONSED WHESHE WAS 6 MTHS OLD.I AM DEALING WITH THIS FOR YEARS.THANKS FOR WRITING ME back where are you located.
  diane

• Re: Re: i have a 9 year old girl
• Posted: 2008-02-22 11:51:50 By Diane B
• TO MICHELLE.
  HI MY DAUGTHER HAS LEBERS CONGENTAIL AMAUROSIS SHE WAS DIAGONSED WHESHE WAS 6 MTHS OLD.I AM DEALING WITH THIS FOR YEARS.THANKS FOR WRITING ME back where are you located.
  diane

• Re: Re: i have a 9 year old girl
• Posted: 2008-02-22 11:51:55 By Diane B
• TO MICHELLE.
  HI MY DAUGTHER HAS LEBERS CONGENTAIL AMAUROSIS SHE WAS DIAGONSED WHESHE WAS 6 MTHS OLD.I AM DEALING WITH THIS FOR YEARS.THANKS FOR WRITING ME back where are you located.
  diane

• Re: i have a 9 year old girl
• Posted: 2008-02-22 10:58:24 By Katie V
• Hi Dianne
  
  I have a 12 year old daughter almost 13 with RP. Meghan was diagnosed at 10. I know how scary this all is. Though she still has RP we are not so worried about her anymore. We are living life to its fullest and trying to make sure she has all the skills she needs to live a great life. It still saddens me but it does not overwhelm me like it first did.
  
  Heck I had never even heard of RP before.
  
  I have started a private yahoo group called
  Parents of Children with RP. Unfortunatley there are over 40 members now SIGH. If you would like to join I need your email address. In the meantime this list is fabulous and I know you will get lots of support
  
  Katie

• Re: Re: i have a 9 year old girl
• Posted: 2008-02-22 11:48:52 By Diane B
• to katie.
  thanks for writing me back this is my e mail address swdian@yahoo.com
  DIANE