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AFBAmerican Foundation®
for the Blind

Expanding possibilities for people with vision loss

Rod & Cone Dystrophy

My sister has had this disease for over 12 years and is 59 years old. I have been to see my Opthalmologist and he wanted to send me to a Retina Specialist. Personal issues prevented me from seeing him, but recently I went to whom I thought was the specialist and found out "after" the appointment, that he was just another eye doctor. He never spoke to me personally, but I overheard him tell his technician that he would need to send me to the Medical Center in Houston to a Specialist. What I found odd was, he wanted my sister's entire medical record to supposedly aid me in him helping me to the fullest. After leaving, and speaking with my sister, I found this suspicious.

Can anyone tell me if this is something they've experienced ? I also want to know how common it is to have both Rod/Cone Dystrophy and Macular Degeneration together. My sister has both, and both my parents have/had Macular Degeneration.

Any help would be greatly appreciated.

My sister is amazing. Although the disease has continued its course, with the help of the bioptics she can now drive again, and is still teaching!!

Thank you,

There are currently 3 replies

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Re:Rod & Cone Dystrophy

Hey all I was diagnoised first with Rential pignemtation and was not accepting of it. This happened during my late 20's so I went to see three more docs and came up with cone rodydystrophy. At the time I was able to see pretty well but glasses didn't work. Then by the time I turned 30 I lost my privileges to drive at night. Now at 34 soon to be 35 I have been declared legally blind and have to turn in my drivers license. I'm a bit depressed but I have been dealing with the condition long enough to know my limitatons. I am now attempting to go through the process of appling for disability and I was wondering if anyone could guide me through waht to expect and things to do to help it move smoothly. I have an 18 yr old who's vision is ok and a 4yr old that we are leeping close watch on she will be wearing glasses and we just have to see what happens. The adjustment from independant to dependant is nerve racking but what can u do. If there is anyone that can help me find as much help as I can get please let me know. Trying to look around on the net is challenging enough. Asking for help from others is trying because im not blind where I cant see anything and Im not walking into walls and trippin over stuff they seem to not understand the amount of help I need. I will research this biotic lens and Im just glad there are ppl out here to reach out to. Good luck to everyone.

Re:Rod & Cone Dystrophy

I am a 50-yr old Caucasian, red-haired blue-eyed female, was diagnosed April 2008 with Fuchs' Corneal Dystrophy and macular degeneration, but told I wasn't old enough to experience vision problems from these two diseases, I was 48 yrs old. I went for a free evaluation for Lasik or RLE to correct my vision to a better state when I was informed I was not a candidate for these procedures because of these diseases. I saw six specialists (retinal and corneal) who informed me that I was not old enough to experience any symptoms from either disease -- that I should not be driving ... they couldn't even get right which disease was the primary. I understand medicine is a science, but, what was I supposed to do??? No one had an answer even though everyone of them saw both diseases, only treated me like I was crazy and I should return in 20 years when the diseases progress. Well, I now have a group of 3 wonderful doctors who are helping me through this crap and working with each other. I am losing my vision due to a form of macular degeneration, cone dystrophy (a form of RD?), but have been assured I won't go completely blind in the black. Every week and sometimes every day is a decline and another adjustment ... I count my blessings for the gradual declining of my vision so I can adjust, even though many times it is a daily adjustment. Probably the hardest adjustments come with not driving and secondly having to admit to those around me that I need help (with anything), since I've always been very independent. I have reared two children on my own, due to a husband who abandoned us. I've always worked hard and done what needed to be done to make it in life; I've been the one who made it happen and the one that everyone could count on to help ... so asking for help or admitting I cannot do something is extremely difficult! Rest assured, I'm fortunate to have supportive children and I have a wonderful boyfriend - I count my blessings and do not take it for granted. As for information, I'm in the same boat as others. I've also been working with our local institute for the blind and deaf. They are awesome and can help with the low-vision needs and things we must learn. To all of you, I understand and look forward to whatever suggestions and help you may have to offer. The process is not easy or fun, but I have a wonderful soulmate, children, friends, siblings and a beautiful grandson to enjoy, so I don't have a choice but to work through the challenges, depression and adjustments.

Re:Rod & Cone Dystrophy

I have a genetic form of Rod Cone Dystrophy which is also called CSNB. It took five years to become fully diagnosed. What i would like to know is how your sister is able to drive again? I am a teenager at about driving age and my disorder restricts me from driving

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