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• cone rod dystrophy
• Posted: 2010-02-26 19:27:13 By Kara B
• Hello, my name is Kara. I am 35 and was just diagnosed with cone rod dystrophy. I never noticed any problems with my vision, other than wearing contacts from having near-sighted vision and a sensitivity to light that I thought was from having blue eyes and wearing contacts. But last summer, while having a optometrist appointment, I was sent to a specialist, as my doctor thought I might have RP. After having several tests, including an ERG, I was diagnosed with CRD. I have vision loss in my peripheral only. I can see colors fine. I feel like I can see in the dark fine and the sun is bright, but sunglasses work well. I am scared, but I have a really supportive family. I am more scared because I am a single mom to 2 young kids and I am one year away from finishing college so I can teach elementary school. I know that there could be worse things, I just feel like, at a time in my life where college and teaching have been a source of my purpose in life, besides being a mother, this news now changes everything. I am trying to be thankful that I have my vision and I pray that my disease progresses very slowly, like it has. It saddens me that I may not beable to see my children's faces or their children's faces. But atleast, they are safe where I will always beable to hear and feel them.

• Posted: 2010-11-05 16:04:02 By Aletha B
• Hi, Kara. My name is Aletha, and I also have cone-rod dystrophy. I'm 39, married & have 2 children(9 & 11). At this point, my corrected vision is 20/80. I have significant peripheral vision loss. I can't see in the dark anymore, I always wear sunglasses when outside, and although I think I see colors, I do test as color blind. I used to be a special ed teacher but have had to give up that career. I am so thankful for a very supportive family and group of friends - not sure what I'd do without them! I certainly relate to your fears and worries as I have been there and am going through them myself.

• Posted: 2011-08-07 12:09:34 By Kim B
• Hi Kara, I hope you still check this message board - as I would like to have someone to talk to about the challenges of having cone dystrophy. I'm 32 years old and was diagnosed with cone dystrophy about 8 months ago. I have worn glasses/contacts for near sightedness since I was 12 and about a year ago I noticed my eye sight was getting worse - I thought I just needed a new prescription. Since then I have undergone several eye tests and was diagnosed with cone dystrophy. I have trouble seeing in the night time and I have also noticed some changes in my color vision and also my eye sight is blurry, I often don't see details. I understand your fears about the future. Although I do not have children, I am single and live by myself. I work full time as a researcher and spend many hours in front of a computer/reading and writing. I am a pretty independent person and I worry that that may change in the future. I also worry about my social/personal life. I hope you still check this message board from time to time as I would love to have someone around my age to talk to about the challenges of living with cone dystrophy.
  
  Thanks,
  Kim

• Posted: 2012-04-16 11:41:07 By Charlotte R
• Hi Ladies,
  I hope one or more of you are still checking here. My name is Charlotte. I'm 39 and was just diagnosed as having Cone-Rod dystrophy. I was diagnosed as a child with Stargardt's disease and was told I would lose my central vision eventually, but would never go completely blind. Now that diagnosis has changed along with my prognosis and I'm finding I have a lot of questions and would like to find others to chat with. I'm a mom of two, married and am a sculptor with a bachelor of fine arts degree. I'm still working for now, but am not sure how much longer I will be able to continue. I'm trying to take this all in stride, but it's hard when you feel like you can't decide what to do next, because you don't have all the information you need.

• Posted: 2012-05-22 17:06:26 By Jessica Y
• Hi Charlotte my name is Jess and I also have CRD. I live in Texas and dont have alot of resources. I am always trying to find support groups so I could have someone to talk to that share my everyday challenges. I think because this condition is so rare its hard to find someone to talk to that knows what Im going thru. So please feel free to write me back anytime I would love to talk to someone that understands what I am going thru.

• Posted: 2012-05-14 16:57:06 By Jessica Y
• Hi Kara my name is Jess and I also have CRD I am 40 now but was diagnosed when I was 36. I live in Texas andIm having a hard time finding anyone else with my disease.