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• Rubella and Ushers
• Posted: 2008-02-15 12:59:06 By Cristy W
• Daran would probably know this but anyone else tht knows about it can respond to. I received an email from Dr. Kimblering and since my mother had german measles when she was pregnant may not link me to Ushers. He said that Bath cataracts and pigmentary retinopathy are components of the symptoms from Rubella. What do you think of that? I also have the hearing problems. Not sure what to think?

• Re: Rubella and Ushers
• Posted: 2008-02-16 11:44:28 By Darran Z
• Bill is correct. I know another doctor with both genetics and ophthalmology certifications that would conclude the same thing. Essentially, Rubella causes perminant damage, but it's not progressive. That is the key difference here.
  
  When my family first met Bill in 1987, I do remember the rubella question coming up. They really wanted to isolate what caused it. But most people with Usher, their mom's did not have rubella during pregnancy. But as stated, the key difference is progressiveness of a disease. Usher is progressive, particularly the RP.
  
  Another way to look at it is if someone became deaf by meningitis. The damage is done. So it is when someone has rubella while pregnant. But you are likely experincing progressive RP, correct?
  
  Darran

• Re: Re: Rubella and Ushers
• Posted: 2008-02-16 18:12:11 By Cristy W
• It's hard for me to say whether or not its progressing since I had the cataract surgery a few months ago I see much better. I personally think if I had a specialist that monitored it, it probably is progressing. The headlights at night when driving was a BIG problem but now its much better. Although, I hardly ever drive at dark unless of an emergency or work holds me too late. I haven't drove much at night since about 1999. I do have the problems seeing at night; however, it was improved when the cataracts were removed and I do have trouble adapting to light changing going from the bright sun to a dim room. I haven't had any test to check the visual field or anything. I noticed since the cataracts where removed that I can see better to the side and if I am not squinting I can to the side much better. Although I do notice in dimmer rooms its not as good. The hearing has been stable for years. Not sure what the old age will bring, probably shouldn't have been in the bars partying when I was younger, sure that will not help. LOL Who knows, I think I am falling apart.. LOL... By the way Daran, alot of people in the RP group on myspace talk and it's interesting, would love to see you get on and join the group. I think you have alot to offer to them. They are all dealing with some of the things we do.

• Re: Re: Re: Rubella and Ushers
• Posted: 2008-02-17 12:09:10 By Darran Z
• When I say progressive, that would mean your visual field is progressing. The RP in Usher is a Rod-Cone Dystrophy, meaning your rods (night and visual field) progress. If you haven't had a visual field test done, then I highly suggest it. Because if you are driving, then you could be driving illegally. Many states have a minimum visual field of 70 degrees or 110 degrees to drive safely.
  
  Your Visual Acuity (central vision) may or may not be affected. The cones are one of the last things to go and that is sometimes when people have "pinpoint" holes anything with 10 degrees or less is considered this. They often retain excellent visual acuities.
  
  The fact that you had cataracts removed tells me the cones are not affected severely. Since that is what cataracts do, is literaly "destry" your VAs due to cloudiness. That's why you experienced improvement is that the cataract is removed. It's kind of like removing a screen window with a glass window.
  
  But often, when there is damage done during pregnancies, the damage is done and not progressive.
  
  The hearing may or may not progress. There are few cases that hearing loss does progress, but for the majority of Usher it remains the same throughout life.
  
  Darran