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• RE: 11yr old 'probably...'
• Posted: 2008-01-07 12:33:36 By wendy f
• Ooops! Sorry, I forgot to say in my first post I am aware of Usher Syndrome but don't know much about it. I've contacted 'Sense' the UK deaf blind charity and they will put a family outreach worker in touch with me.
  Wendy

• Re: RE: 11yr old 'probably...'
• Posted: 2008-01-07 14:16:30 By Darran Z
• Hi Wendy,
  
  My first instinct was to look into Usher Syndrome because that is commone among having RP and hearing loss. While most people with Usher do not have progressive hearing loss, some do, such as myself.
  
  Where are you going? Have you gone to Moorsfield Hospital? That would be the place to go to look into this further.
  
  Secondly, you may wish to consult with Dr. Bill Kimberling who is the Director of the National Center for Treatment of Usher Syndrome here in the States. he is well respected around the world and works with several European colleagues in regards to Usher. He may have more information. You can visit h is website and cotnact him at:
  http://www.boystownhospital.org/Usher/index.asp
  
  But yes, sometimes RP is present without pigmentation.
  
  Darran

• Re: Re: RE: 11yr old 'probably...'
• Posted: 2008-01-07 14:40:39 By wendy f
• Hello Darren, Thanks for getting back to me so soon! I've been looking here at the message boards for a few days now, I've read all the Usher message board stuff and I've read through all of the 'Other retinal diseases'.. I'm expecting them to say its a type of Usher to be honest. My daughter is taking it all in her stride. She's amazing!
  We're going to Addenbrookes Hospital, Cambridege. Thats where they did the ERG. We live 50minutes drive from Cambridge. The doc we have to see there is an Oplthalmic Consultant, Miss Allen. We haven't met her yet. The only one we've seen is the local hospital eye doc.
  Thanks for the Boystown link, I'll check that out. I'm relieved to hear there can be PR without the pigmentation, I was a little worried they would say its so rare they can't say for definate. I just want the diagnosis done, recorded, etc then we can get on with making provision in school etc, and learning tactics to make life easy, just as we have with the hearing loss. She wears fab digital hearing aids, uses a radio aid and has a vibrating pager system at home. She can still use the voice telephone, but only to familiar people. There are no other parents locally that have had their deaf child diagnosed with RP, she's the first in our area. There is a school with a VI unit and a school with an HI unit but neither have had a pupil needing support in both fields so any tips on education settings would be appreciated.
  Thanks, Wendy

• Re: Re: Re: RE: 11yr old 'probably...'
• Posted: 2008-01-07 15:05:46 By Darran Z
• There is a social group in London of Usher people. They are quite active. Although they are mostly young adults it maynot hurt to ask them if they know of children closer to your daughter's age. The original group started an MSN Group called Usher Buddies International and recently moved their board to another site. But you can get that info from the UBI MSN Group.
  
  Darran

• Re: Re: Re: Re: RE: 11yr old 'probably...'
• Posted: 2008-01-07 15:35:04 By wendy f
• Thanks a million Darren, I'll check that out too. Better go and get this little one ready for bed, thanks again. I'll check back on here soon, the info is amazing. Thank you. W.

• Re: Re: Re: Re: Re: RE: 11yr old 'probably...'
• Posted: 2008-01-08 11:45:57 By Katie V
• Wendy. I can just imagine what you are going through now. My daughter is 12 with RP. I have a Private Parent of Children with RP group ( only because the children are minors and we talk openly about them) If you would like to join I need your email address. We have another family from England on the list.
  
  Most have RP but several have some hearing issues.
  
  Katie

• Re: Re: Re: Re: Re: Re: RE: 11yr old 'probably...'
• Posted: 2008-01-08 13:12:26 By wendy f
• Hi Katie,
  Thanks, I'd love to join, I'm in need of as much info as possible! wefassler@aol.com