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• Cone dystrophy for my daughter
• Posted: 2011-07-16 07:12:41 By NATARAJAN K
• Hello, my daughter is 5years 6months. Initially check up done for squint and for observing difficulties in the school. ERG test done, diagnosed with cone dystrophy.
  She was given glasses and occlusion of IE 2hrs/day and advised to review after 3months. As far we know, don’t have any history of hereditary. We are devastated and scared about her future. How to send school??. She cant mingle with Blind school also.Please help us with any informations or treatment. Thank you in advance.
  
  

• Cone dystrophy
• Posted: 2011-08-27 00:03:45 By Kathy N
• Hello, I am a 15 year old girl who was recently diagnosed with cone dystrophy too.Sure I have some struggles with school and stuff, but I get through. And plus the teachers understand my condition and they tend to put me in the front of the class where I am able to see.
  The first retinal I went to was at Stanford Medical CLinics, and they wanted to take ERG tests too, but my mom didn't think it was necessary, so I didn't. A few months later we found a new doctor, and personally I think this doctor is the best I've been to.He took tests to cheeck my vision and eye pressure, etc. My vision was 20/100 in December of 2010, and 6 months later My vision actually improved to 20/80, thanks to these vitamins my doctor suggested me to take., and let me tell you they work miracles. I suggest that once your daughter gets older, and able to take pills to get her Macular Protect Complete. That is what I've been taking for almost a year, and it has been working for me so far.
  My doctor has also told me about a patient who had cone dystrophy too, and after years of taking the vitamins and constant checkups, he has improved a lot and has been able to see fairly well too. So I don't think you should too much about your daughter and her education, but one thing is for sure, you need to let her school and teacher's know, so they could help as much as possible. I started struggling with my vision at around 11 years old, but I managed perfectly fine, so I believe that your daughter will turn out fine too.

• from lishbug72
• Posted: 2011-12-07 15:26:27 By Alisha A
• If you haven't already done so...you need to make an appointment with the Special Education director for your daughter's local school system. They will establish an IEP (Individual Education Plan) to ensure that she has everything she needs to do well in school. I also have cone dystrophy and went to public school from kindergarten thru college and did just fine. Blind school was not an option for me either b/c it was about 9 hours away.