con rod dystrophy "probably"

Posted by docsknotinn on 2/28/2012 at 8:01 PM

Hi I am new to this. Both this site and the loss of my vision.I have been dealing with this for about 5 or 6 years but only in the last year has my vision become bad enough to make everything a challenge. My doctors can't give me a prognosis because no one is sure what my condition is. I can't drive, I can't read without a lot of magnification, I have no depth perception and can't see in bright or low light. I just want to connect with others who understand what I am dealing with. Anyone out there?

There are currently 3 replies

Re: con rod dystrophy "probably"

You are not alone. In 2010, I received a double whammy diagnosis (Cone Dystrophy and Optic Nerve Atrophy) which means my color vision is dying and my Optic Nerves are dying. I have noticed for at least 10 years that my vision was decreasing. It took 5 different eye specialists to give me a variety of tests (Color vision, BAT night blindness tests, Field Vision tests, Retina mapping and more) to determine what I had. Incidently, I am an insulin dependent diabetic (not Type 2) which is most likely what is decreasing my sight and will lead to blindness. At this point, I do not drive at night. I can barely read street signs. I will disdain giving up a vehicle. However, there are some places that may help you. Have you contacted your local city to see if they have a disabled citizens group? If not, maybe you could spearhead one. In my city there is a disabled group that promotes the needs for handicapped awareness and access to buildings. Plus, I have heard that there are taxi companies that offer $2-$5 fares for visually or blind people needing to get to a doctor appointment. Best wishes with your situation.

Re: con rod dystrophy "probably"

I was diagnosed with Cone Rod Dystrophy when I was six. I'm 33 now and I still have pretty useful vision. I can still drive, although I typically don't at night. I'm still independent - I don't use a cain or anything. I can't really read books anymore as my contacts are so strong that they almost make me farsighted so things like the iPad or Kindle are god sends.

My brother has the same condition and his vision was much better than mine until recently, so that of course scares the crap out of me. His vision really took a turn for the worse and I'm hopeful that mine stays stable long enough for them to possibly start stem cell therapies etc..

So yes, we're out there and we understand. We're probably just as clumsy as you are and bump into things and knock things over :)

Re: con rod dystrophy "probably"

Your not alone I'm only 12 years old and I have con-rod distropy it really sux my eye site will slowly decrease by the time I turn 26 I may be parsley blind but any ways your not alone stay strong and live life to the fullest

Love kaytlin