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colin Message
17 Jul 2009, 03:34 AM

Not sure if this community is still active since it hasn't been updated in 5 months. Nonetheless, hello! I'm a 33 year old male with GA. I was diagnosed about 6 or 7 years ago. I'm not on a protein restricted diet and my ornithine levels hover between 400-600. I'm nearsighted at about a -5.5 or so. I chose to stop the protein restricted diet after about 3 weeks of taking it. I found the supplement shakes tasted like burnt plastic and the only way to make it palatable would mean drinking 6L a day! My wife made an interesting comment: "So you can eat like this, die earlier with vision or live a long time and be blind?" I believe that the current methods of controlling GA vision loss are treating the symptoms and not the issue. The issue is that our systems cannot adequately break down arginine which leads to increased blood ornithine levels not our protein intake. It's very interesting to read the experiences of others with GA. I too saw an arrogant ophthalmologist who essentially said I should stop driving and sorry but you are going blind. Regardless of what the ERG etc say I still have vision that is correctable to 20/20 can drive, play sports, and currently show no signs of cataracts. Testing vision can be a very subjective matter so don't ever let someone tell you that because your ERG was not normal or your fundas was unremarkable that you can't do regular activities. I would love to discuss vision particulars with those who have GA. cheers
mbrnnrbrwn Message
17 Jul 2009, 01:49 PM

Colin, Welcome and yes we have defnitely been a quite group lately. My 11 year old daughters levels last week were around 339, 453 in January, and over 1,000 when diagnosed this past fall. We ave not seen any vision change since last fall and the swelling in the center of her retinas have decreased, so is that from the formula and reduced protein, who knows. Did you try the diet 6 years ago? The first formula Rachel tried, she could not tolerate. It was Ross Cyclinex. There is a new formula from Liverpool. It is call EEA supplement from a company called Vitaflo. She has been able to tolerate that taste. Our goal is to keep her levels between 300-400. She is suppose to eat only 15 grams protein. She probably does this 5 days a week with two off days. Cheese pizza day and Chipoltes are usually the off days hovering around 30+ grams on those days. I am a little worried about the growth of Rachel as she enters puberty(yikes). She weighs the same(maybe a little less) than she did a year ago and has only grown 2 inches. She really likes the new skinny her. Rachel does not have a lot of night time vision left and we are not sure what her peripheral fields are currently. They did test her, but we think she had a learning curve because if the results we acurate she would be running into things more often than she does. She does play sports, but I find it is the lare ball sports she does better at. Soccer, is painful to watch her play softball. Her corrective central vision is ranges between 20/30-20/70. Her biggest issue is eye fatique. I do agree that they are treating the symptoms and not the issue. There is only one research being done currently that I know of and I think they only have 10 patients to follow. I can't find any information on this research, but Rachel's geneticist told me about it. Does anyone know anything about it? About half of our members have introduced themselves. I am also a member of an RP sight, because that is what Rachel was diagnosed with first. Vision issues are similar. Thanks for introducing yourself. Have a wonderful weekend. Missy
JenD Message
17 Jul 2009, 08:19 PM

Colin, My sons are on a low protein diet, but it does not include any substitute shakes. My 17 year old is supposed (notice that word ) to limit to 40g my 7year old 25g. The youngest son's levels have came down from 940 to 506, and my older son from 760 to 400's. Rick's corrected vision before the diet was 20/50, this year we got 20/30. Is it the diet? He has peripheral loss, but I haven't been told the numbers. His cataracts bother him a lot. He said that he has a hard time seeing color now. Hope to get him in with a different retina specialist soon. Our doctor is working on it. I know that they see the markings on my younger son's eyes. His "lazy" eye is at 20/100, but he has little correction in his other eye. Since your levels seem pretty equivalent to ours do you try to avoid meats, and cheese or are your levels that good while having steak and chicken? Thanks for joining and sharing. Jen
colin Message
18 Jul 2009, 04:51 PM

Jen I was a vegetarian for a about 15 months but I eat meat etc now again. I've noticed recently that some sports like badminton it's harder to track the birdy. I was not one of the 5% where vitamin B6 lowered my ornithine levels significantly unfortunately. Missy I have a bunch of links etc that I will post to articles and research etc into RP and GA. (I don't have them on my laptop here). There is one company called optobioncs ( that are studying a solar retina implant for RP patients. Balancing the diet with proper growth and nutrition is difficult. I commend you for being able to do it. I could not justify the negative health implications at the time. Perhaps if my vision gets significantly worse I might consider the diet again. In the meantime I'm hoping for a more effective treatment. I'm currently working on a project to show pictures of what I see with GA. My goal is show "here are my ERG results etc and this is what I see."
20 Aug 2009, 12:01 AM

I have a question for Colin on this feed. My son has had a 'Goldman visual field test' in one eye. The opthamogist has had his drivers license revoked based on this test. He is scheduled to take a 'binocular Goldman' test in the next 2 weeks - (both eyes). He is terrified to do so because it may 'seal his fate' regarding driving. It sounds like you are still driving. How is that? I am trying desperately to help him. Any suggestions? A Mom
marymc Message
26 Mar 2014, 06:44 PM

Colin, I hope all is well. I was wondering if you have been treated for your cataracts? My son has developed cataracts in both of his eyes. He is uncomfortable. Any other news or updates for treatment or research. I look forward to ant information. Sincerely, Mary McGaughey Email