Cone Rod Retinal Dystrophy
Posted by sykorose on 7/8/2010 at 7:51 AM
Aloha, my 11 yr old son was diagnosed with Cone Rod Retinal Dystrophy 2 months ago after his distance vision became distorted and blurry. He has had the ERG and numerous scans done already. There is not much information out there about this disease, and he is scared and upset. He has had to quit baseball because he can no longer see well enough to play. His vision is currently 20/100 in each eye. I am terrified about raising a sight impaired child and need some good advice. Thankfully, we have lots of resources thru the state of Hawaii, but this is all overwhelming. I created a blog about Retinal Dystrophy if anyone is interested in checking it out. www.retinaldystrophymom.blogspot.com
There are currently 6 replies
Re:Cone Rod Retinal DystrophyPosted by 04turtle on 7/11/2010 at 10:27 PM
Hello, both of my sons also have cone rod dystrophy. One is 17 and one is 21. I won't lie to you it has been tough. My youngest also cannot do any sports with small flying objects. We are trying to find solace in the technology that is availble. Both use a monocle and wear orange colored glasses to help with depth perception. Yes their vision changed for this diagnosis but has remained stable for a couple of years. Good for you starting your own web site! Always remain pro active.
Re:Cone Rod Retinal DystrophyPosted by neuroncrazy21 on 7/13/2010 at 3:59 PM
My name is Rebecca, I am currently 16 years old and legally blind. I have a genetic condition but wasn't diagnosed until I was five with an ERG and other forms of what I call obnoxious testing. I cannot play sports, but my parents have found alot of supplements for me to get involved and be as social and active as anyone else.
First, school. I read large print (and sometimes braille in class). It makes my life so much easier and I suggest if your son starts to use it to maybe do a low vision demonstration to the class so other kids aren't curious. For example, my vision teacher came into my 3rd, 4th, 5th, 6th and 7th grade classes and did a demonstration with the brailler and did everyone's names in braille. Also, in my high school I give a demo each year and information about vision disorder awareness, how to help others if they need assistance, and what it means to have vision loss.
Getting around-I use a cane and I am currently brushing the surface of maybe getting a guide dog for college in two years. I have contrast, depth perception, periperal (side) vision, and distance vision loss. I also am completely blind in bright light and no light. The cane helps me but only to a certain extent. One thing you should encourage your son to do if he has to is to not be ashamed of the cane. It does not define him as a person, it is just a tool to help him. He should never be ashamed of his visual impairment!!! In fact, it has been more of a gift to me than a curse, and I have had such opportunity and adventure because of it.
Sports/Social-I go running every day for 2.5 miles on an indoor track near my house. Also, find out if there is a goal ball team near you. Goal ball is a sport sponsored by the National League of Blind Athletes. It is kind of like crab soccer, and all of the kids playing have a visual impairment. This is also another way for him to meet other kids going through a similar situation. This helped me alot, especially going through middle school.
Programs-As I said, meeting kids who have a visual impairment is really important and helped me tremendously. One program that I loved was NASA space camp for interested visually impaired students (SCIVIS). NASA runs their normal programs but has some modificaitons on the computers and provides all materials in large print and braille if necessary. I had the time of my life and I am going back this year-I met so many new friends from all over the world and made memories that will last a lifetime! The program website is www.tsbvi.edu/space
Make sure he knows that his visual impairment isn't as limiting as he might think. I am currently at a program at Johns Hopkins University taking 2 undergraduate courses in neuroscience and organic chemistry. With the proper modifications, I have been having an amazing time here. Anything is possible if you believe in it-and I hope your son does well! If you have any questions, please feel free to email me at firstname.lastname@example.org
Have fun and good luck!
Rebecca (aka-neuron crazy!)
Re:Cone Rod Retinal DystrophyPosted by dbarwick on 7/21/2010 at 6:34 PM
Hello, my 6 year old son has also just been diagnosed with Cone Rod Dystrophy. His grandfather and two great aunts also live with this eye disease. We only found out two weeks ago and we are trying to find out as much information as we can right now.
We are scared but know with new technologies and greater acceptance of people living with a visual impairment life should hopefully be easier now than what it was 60 years ago.
It definately helps to read about positive experiences of others living with a visual impairment and helps to keep us positive.
We are currently in the process of getting what assistance we can for his schooling with regard to tools to assist and also teachers aides where necessary.
Re:Cone Rod Retinal DystrophyPosted by Bargatefoundation on 12/15/2010 at 7:04 AM
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Re:Cone Rod Retinal DystrophyPosted by rishighosh on 3/2/2012 at 10:45 AM
my 2 years old son have been diogonised retinal dystrophy.no proper treatment has been started as he is too small to test .but as a father i know he can just see the objects 3 or 4 feet far from him. he cant see anything more far than that. i regularly surf internet, & got that there is no acctual treatment or mathod to cure the dieses.please please will any one help me. how to overcome.please mail me email@example.com
Re: Cone Rod Retinal DystrophyPosted by brandyt0313 on 7/18/2014 at 12:58 PM
My son also has cone rod dystrophy and we fount out when he was about 7 months old and he is now 6 back than he could see at 20 feet and now only at 8 feet he doesn't see colors and the light hurts his eyes but he does not ever say he can't do anything he is In a class with regular students bit with a vision specialist and is keeping up with everyone else it's a hard realization knowing he's losing it but coping with it and teaching them they can never say they can't do anything they can always try helps alot he pushes himself to do everything
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