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Questions on cataracts & Looking to create a Foundation

marymc Message
26 Mar 2014, 06:33 PM

Hi All, I was hoping to gather and rally as a group to fundraise and find a researcher willing to conduct on going studies for a cure for gyrate atrophy. If anyone one has ideas or know of any doctors willing to do research lets work together to get it going...... Also, I was wondering if anyone has been treated for cataracts ? Look forward to anyone with and new tips on diet, doctors, supplemental formulas, and most importantly if anyone was treated for cataracts. Thanks you- Sincerely, Mary McGaughey
hannah2012 Message
27 Mar 2014, 06:35 AM

Hi Mary, I think we would all like to see more research done on GA, but from my doctors tell me GA is too rare for anyone to be interested in doing research. I have heard of studies of other related retina conditions, but nothing specific. I have had cataract surgery about 5 years ago, I am 34 now. My cataracts became too obstructive to function normally day to day. I am very happy with the results of the surgery. My doctor suggested corrective lenses when he did my cataract surgery, so after it my vision improved so that I don't use any glasses or contacts for most of the time, except for close up reading and night time driving. This has not been a very active group, but I'll be happy to share more information. I don't believe there is anything new to the diet, you just have to try to follow it. What I have noticed over the years when I was off the diet completely is that I had drastic peripheral and night vision loss. Now being more or less on the diet, it's been a lot more stable with no major decreases. My current/ongoing concern is the Macular Edema which has developed and worsened over many years. In simple words this is swelling of the center of the retina which affects my central vision (the only good part of my vision left). This is being treated with eye drops to minimize the swelling but this treatment is not fully getting rid of swelling so the problem continues. If anyone else has this diagnosis, please share some information. Thanks.
marymc Message
27 Mar 2014, 11:50 AM

Good Morning Hannah, Thanks so much for responding to my post! It is wonderful news that cataracts can be treated In patients with gyrate atrophy. Where was your treatment done? My email is Cell 617 827-1781 Thanks again, Mary
JenD Message
27 Mar 2014, 07:06 PM

Mary, My oldest son had to have his cataracts removed when he was 18. He was legally blind going into the procedure and was thrilled with his vision afterwards. Since he was so young they told him that it is common for the lens to haze and that they would clear it with a laser. My son really likes and trusts our local ophthalmologist. We asked his retina specialist at the Lighthouse for the blind if he was ok with our local doctor and he was. It went just as slick and easy as any cataract removal. He also has the macular edema and his younger brother does not. Thanks, Jenny
hannah2012 Message
27 Mar 2014, 08:00 PM

Hi Jenny, If you don't mind me asking, how are you handling/treating your son's macular edema? Anna
hannah2012 Message
27 Mar 2014, 08:02 PM

Mary, I did cataract surgery in Colorado where is live. I was very happy with my doctor and the results. Which state are you in? I am assuming you would not want to travel for a cataract surgery since those are very common, you just should find a good local doctor for this. Anna
marymc Message
28 Mar 2014, 02:19 AM

Thanks to all for responding to my question on cataracts. I was asking because my son has recently been diagnosed with cataracts. He lives in San Francisco. I was concerned he wouldn't able to receive treatment because his eyes are fragile with the gyrate atrophy. His retina specialist in Boston is conservative in his treatments. He doesn't like to risk any sight loss or create any acceleration or progression of vision loss. Sincere thanks to everyone for responding. This is wonderful news. If Anyone wants to share any other tips on diet control, formulas or great doctor contacts, it would be helpful to all to post a list. Also, my sons doctor always says to talk to all doctors, interns and residents to get the awareness and create interest in gyrate atrophy - maybe spark someone to complete research studies. Thanks again!!! Mary
mbrnnrbrwn Message
3 Aug 2017, 01:01 AM

Mary, Hannah, and Jenny,

I have finally been able to get back on rareshare.  I originally started this group when Rachel was diagnosed with GA when she was 10.  She will be 20.  She does have cataracks and is considering surgery, so I am very interested in this feed.  She just tried tow different types of drops and it did not reduce the swelling.  Bummer, though I am not sure she was good about daily use.  She has given up the diet. She is a vegetarian, so is on a reduce protein diet, but not a low protein diet.  She did try a mickie tube for about a year and that was helpful.  She was able to consume 20 grams of medical protein and live on about 20 grams natural protein.  I think she might go back to that when she is out of college.  




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