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Hello, I am new to this forum.

hannah2012 Message
24 Apr 2012, 05:45 AM

Hello everyone! I am not sure if there are any active participants in this forum right now as the last post I read was from 2 or 3 years ago. I have been diagnosed with GA about 19 years ago, I have been on and off and back on the diet and I am currently working with my doctors on finding the best dietary approach. I am also current with my eye doctors on check ups and such. I was hoping to share and learn about experiences of other patients with GA in regards to diet, treatments, eye doctors, etc. Hope to hear back from someone soon. A.
mbrnnrbrwn Message
25 Apr 2012, 11:36 AM

Welcome A, This is not an active group, but it is nice to know there are a group of people here who understand what you are going through. My daughter has GA. She is now 14 and as diagnosed 3 years ago. I think the diet is the hardest part. She is drinking Vitaflos EEA formula. She is suppose to drink 4 packets, but probably averages 1.5 packets a day. She is also suppose to take a creative supplement, but that rarely happens. We have moved and need to set up an appointment with a new geneticist and dietician. We have not checked her ornithine levels since this summer. She is hovering around 600, prior to diet is was around 1,200. Thanks for joining. There is also a small group on Facebook, it is relatively quiet too, Missy
ahlabib Message
25 Apr 2012, 12:22 PM

Hi Hannah My son is 19, and he was diagnosed 10 years ago. In addition to the diet, we moved away from teh Vitaflo because he couldnt stand it -- we changed to another AMino supplements that seems to work for him, and kept his Orn level at 200s. I dont login to rareshare a lot -- but if you have contact details, will be happy to chat with you and discuss further.