I started having vision problems at 8 ... The eye docs couldn't correct me to 20/20, but shrugged it off because I am also ADD and they thought I just wasn't able to pay attention during the exams... At 10 they noticed something wrong with my retina, but i passed all of the glaucoma tests and they settled on solar retinopathy. (As a 6 year old I stared at a solar eclipse but that is a different story) at 17 solar retinopathy is still what the docs chose for my unexplained vision loss. Then when I was no longer able to work or drive at age 27, i was sent to a specialist through social security. After about 3 visits to the ophthalmologists, blood work, and fighting with benefits coverage, it took about a year to get a full diagnosis of cone/rod dystrophy. I was found as legally blind after the 2nd visit to the 2nd ophthalmologist which was within the first month. Initially, it was more strange to get over the mis diagnosis of solar retinopathy, than to accept that I had a rare genetic mutation that would eventually leave me completely blind.

I got a diagnosis in a matter of hours but I never got a final verdict. I was never told that this is it, you just have to live with it. But that was 20 years ago so I'm sort of resigned to it now!

29. Saw my normal eye doc, he said something's up with your retina, go this specialist. Saw the specialist and hand a diagnosis (multiple scans, ERG test, and ran my genetics). Took about 2 months after first meeting the specialist.

I went blind early on I went to a new doctors and didn’t give them my medical records the first time if not the second time he took a look he informed me and I thought yep that’s what my documentation says my parents are in great denial. Of it and claimed other stuff which I also have but the stuff written on my paper wasn’t told to me. I have a rare condition called peters anomaly. After the second doctor said it without any records I went yep that’s right. Probably have it.

Thanks for all your responses. It’s going on 4 months now since my vision loss has started effecting me (progressive central vision loss) and I’ve seen multiple Ophthalmologists, with no diagnosis. I think I’m getting closer as a couple say it looks like a macular dystrophy, but my genetic testing results did not point to anything specific. Then Doctors don’t tell you where to go from there , I’m seeing a “genetic genius” (in the words of the ophthalmologist that referred me) in 3 weeks so maybe I’ll finally get some answers.

Atleast 10 years. Doctors and family didn't know what it was when my vision was failing and only recently found the diagnosis for it in 2019.