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• A concerned mother
• Posted: 2007-08-20 17:53:37 By Bernadette F
• Hello, My 16 year old daughter was diagnosed with Best's Disease at the age of 12 and last week at the age of 16 lost the central vision in her right eye. I would love to think that she has some time up her sleeve before the other eye is affected. Are there many of you out there who have one eye worse than the other? We would love to think the gene treatment will be available in time to save the left eye. Bernadette from Melbourne Australia

• Re: A concerned mother
• Posted: 2007-08-30 21:50:33 By Ellyn S
• Hello Bernadette,
  
  I am so sorry to hear that your daughter has lost the central vision in one eye at such a young age. Yes, it is possible to have different degrees of Best Disease in each eye. Hopefully, her second eye will not follow the first for a very, very long time. If you want to talk to others with this condition, you can usually find some of us chatting right here at the FFB chatroom on Monday nights at 7:00 p.m. Eastern time. I don't know how that translates to your time zone, but perhaps you can figure it out and chat with us soon.
  
  Lots of luck to you and your daughter,
  Ellyn from New York

• Re: A concerned mother
• Posted: 2007-09-01 23:01:59 By Amy G
• Hello
  I can understand where you are coming from. I was diagnosed with bests when I was 5 years old. I wear glasses and got biphoicals when I was 18 years old. I know that it is hard to do things. I am now 29 years old and I am a mother of 3 and I am losing my sight in my right eye. It is very hard to explain to my children what is going on. But thank goodness as of right now none of my children have it yet. My two older children were glasses. I hope that something will turn up for your daughter so that she is able to keep on going. If you would like you can email me and i will try and get back to you. At agrabau@msn.com
  Look forward to maybe chatting with you sometime.

• Re: A concerned mother
• Posted: 2007-09-06 14:28:48 By Sharon E
• Hi my name is Sharon and I have Bests also but was told at 38 that I had it. Some of us are chatting this coming Monday 10th at an early time of 1pm pacific coast time instead of our regular time. If you can come and join us. Please let us know if you can make it by leaving a message on this board.
  Talk soon
  Sharon

• Re: A concerned mother
• Posted: 2007-09-07 00:39:26 By Bernadette F
• Dear Sharon,
  Thanks for your message. By my calculation 1 p.m. 10th Sept Pacific Coast time converts to 6 a.m. 11th Sept Melbourne time. I will try and remember to get up and chat with you.
  Regards,
  Bernadette