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• Best's Disease
• Posted: 2009-02-10 21:00:32 By Carmela A
• 
  Hi,
  
  
  I am new to this forum. I have a mild Best's disease (diagnosed last year Aug) in both eyes.
  
  I am 46 y.o and my visual acuity is 20/30. I am wearing bifocal glasses. I have some symptoms.. I cannot see good in dim light. I am having trouble driving at night in unfamilar area or dark areas - dont know if it is related to depth perception or colour contrast problems. I will see Orthoptist and Occupational Therapist from Vision Rehab Centre next month. It has been very hard for me to deal with this as I am profoundly deaf and worried what it will happen to my eyes. None of my family have Best Disease. her eye The ERG shown normal but the EOG showed abnormal. My right eye is more affected then left eye. My retinal specialist couldn't give me accurate answer how much will it affect my eyes in the future.
  
  I have been trying to get as much as information about Best Disease on internet but I would like to get in touch with people who have Best Disease via chatrooms.
  
  Thanks
  
  calpen
  
  

• Best's Disease Chat
• Posted: 2009-02-20 20:03:38 By
• Hi Carmela,
  
  To use the Chat rooms you first have to have the FREE Java runtime software installed on your computer, so go to www.java.com and download it and install it. The re-start your computer and come back to www.blindness.org and under YOUR COMMUNITY select CHATROOMS. It will take a moment for the chat software to load, and then at the top of the page will be a menu of the various chat rooms. Be sure to select the BEST DISEASE chatroom.
  
  Once you are in there you will be able to read a lot of our PREVIOUS chats. We usually meet at 4 PM PACIFIC TIME on MONDAYS. The exception to this is the FIRST MONDAY of each month, when we meet at 1 PM PACIFIC TIME for the benefit of a chat member in Denmark (it is 11 PM her time).
  
  There is usually someone on at those appointed times, often more than just a couple. I hope this is helpful and we can meet you on chat soon.
  
  Although the name on my logon says "SANTA" I am actually one of SANTA'S helpers and go by the name SJ (Silent Jim).
  
  See you!
  

• Posted: 2009-02-23 20:29:04 By Sharon E
• Hi Carmela, this is "Santa". My real name is Sharon. It was my "helper" who wrote to you the other day. We just had chat and were hoping you would come on. There were only two of us tonight. We were on from 4 to 5 PM (pacific time) I live in Seattle.
  
  May I ask where in the country you live? Would our chat schedule be convenient to you?
  
  I have Best's in both eyes. I did not know I had it until I was 38 years old. I am now 63. It's not good for me, it has been getting worse. I have not been stable (vision-wise) for several years.
  
  If you could come on chat next Monday, it will be at 1 PM (pacific time) because of our friend in Denmark. If you come on chat, you can give your email address to some of the chatter - but don't post your email address here on this message board because it is public. All the chatters have exchanged telephone numbers because I can talk on the phone better than I can type. To do emails now I have to use binoculars or my "helper."
  
  If you get this message before next Monday and can come on at 1 (pacific time), please answer back on this message board to let us know so we can look for you in the chat room.
  
  Hope to talk to you soon,
  
  - Sharon