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- Question
- Posted: 2008-10-29 23:37:48 By Stephanie R
- I am 46 and female. I am a manifesting carrier of X-linked Cone-Rod dystrophy. My Dad and Uncle were both blind with CRD. I have a 19 year old daughter with no symptoms.
My question is as follows. We were recently in the car with my son who is 14.5 years old. It was 10pm and dark and we were driving on the highway. Out of the blue (we weren't talking about vision at all) he happened to mention that he sees better in the dark. He is nearsighted and wears glasses but his eyes have always corrected to 20/20 or 20/25. He also mentioned while we were driving in the dark that it is easier to read with his glasses off "because the print is bolder without the glasses." I thought these were odd comments from a teenager, especially since the CRD is not a topic of discussion in our family.
My question is two fold. A) Should I be concerned and take him to my doctor in Iowa and B) Do any of you see text "bolder" without correction for nearsightedness (or at least when the sight was correctable?) I have heard that sometimes nearsighted people don't need glasses to read but not that the text was bolder.
I don't want to scare him unnecessarily so even though I realize I could always have him evaluated I would rather wait until there is a reason or need to do so. Since he sees ok now with the exception of being more comfortable in the dark and the comment about reading without his glasses I am not sure the time is now.
Thanks!
Steph
- Posted: 2008-10-30 12:27:34 By Colleen P
- Hi Steph,
I would take a wait and see with your son at this point although that is only my opinion. If there was a treatment available today then I would have him tested, but til such time why bother.
That is what I am doing with my other 3 kids, even though I am aware there is a chance they may have it.
As I don't know the genetic cause of my son's cone-rod yet I am interested to know what you mean by a "manifesting" x-linked carrier? I would like to know if I may be the carrier in our case even though I have no family history. Thanks. Colleen
- p.s.
- Posted: 2008-10-30 12:32:15 By Colleen P
- I don't know about the "bolder" comment. I've never heard anyone say that before.
My son doesn't see better in the dark. He just complains about the slowness to adjust when light conditions change. Colleen
- Reply from Alisha
- Posted: 2009-03-21 00:47:33 By Alisha A
- Steph,
As a mother with CRD, I understand how scary it is to think about your child inheriting the disorder. It's a good idea to take him to a specialist who is familiar with CRD---even if it means going out of state. I live in West Virginia and travel to Philadelphia to see my eye specialist. I've "talked" to lots of people online who didn't get diagnosed until their late 40's and 50's. They were still able to drive and live completely independent lives. Unfortunately my brother and I were not in that category and have been well past legally blind our entire lives. So, it goes to show you that everyone's case is different.
It's very important that you remain positive, but realistic when talking to your son about the possibility of having CRD. Teenagers actually respond better when their parents are honest, but optimistic.
Neither of my two daughters have CRD, but my older daughter was born with a severe-profound hearing loss.
Whatever the outcome, you will be well-equipped to help your son. My prayers are with you! Keep us posted!!!!
~~~~~~~~~~~~~~~~~~~~~~~~~Alisha




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