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• Hello to our group!
• Posted: 2008-10-09 13:42:57 By Colleen P
• I see we have our own group now thanks to Alisha I believe.
  Anyhow I have posted on the RP board a couple of times, but nice to talk with someone with same condition in family.
  My son was diagnosed last year at U of M in Minnesota. He was 19 at the time. His ERG showed definite cone-rod dystrophy, although at present his central vision is still correctable with glasses, but he has totally lost all his lower peripheral & has spotty vision in other directions.
  We are really trying to get his gene identified. I would like to know if anyone else has had success with finding the genetic cause.
  We have 3 other children younger whom I haven't had officially tested yet. Hope to talk soon & share some ideas, etc. Colleen

• My son has CRD also...
• Posted: 2008-10-13 23:23:54 By S B
• We are in the process of getting some gene testing arranged - here is a couple of labs which provide the service:
  https://www.carverlab.org/requesting-genetic-test
  
  http://www.asperophthalmics.com/ABCRgenetest.htm - which is located in Estonia!
  
  I think the Harvard website had some links to gene testing labs also.
  
  Have a look at this post - some stuff I've figured out/stumbled over that may help some people:
  http://www.blindness.org/index.php?option=com_simplestforum&view=postlist&forumId=17&parentId=27434&Itemid=161
  
  So far, my son is now three weeks into taking the supplement, and it's definitely not a cure - but it has helped. He's now back doing things that he'd lost interest in some weeks ago. but the rate of improvement has slowed somewhat. Still - any help is better than none - and if this stuff (dunaliella salina) helps - great!
  
  Hope this helps some people,
  Steve.

• Hi Steve
• Posted: 2008-10-18 11:17:03 By Colleen P
• How old is your son?
  What is dunaliella salina & how does it work?
  We were told that if taking supplements that you should take Lutein 10-40 mg. daily & DHA 500-1000 mg. daily or eat fish esp. salmon or tuna 2-3 times weekly.
  Also to wear sunglasses when outdoors & definitely not to smoke. We do not supplement with Vitamin A at all as if the mutation happens to be in the ABCA4 gene then this would actually be detrimental.
  We attended the FFB conference last August & I really got a lot out of it. I would encourage all to attend this national conference next year if possible. Because cone-rod is very rare I think it helps for our presence to be there so we are on the dr.'s minds as they move ahead with the research. Talk again. Colleen

• I would reply...
• Posted: 2008-10-19 20:59:06 By S B
• But the damn forum software won't let me! 3 hours wasted, and this is the 4th try! Every time I try to post, it gives an error, and loses everything I've typed. Sorry, but I'm not typing it out yet again.
  
  Some other time maybe.
  
  Look in the RNIB forum: http://www.rnib.org.uk/messageboard/thread.php?threadID=6243&topicSort=desc
  
  Copy and paste this link into your web browser:
  
  http://www.blindness.org/index.php?option=com_simplestforum&view=postlist&forumId=17&parentId=27434&Itemid=161
  
  ... I'll post an update in a few days. If I can get this site to work.
  
  Steve.

• ...it took a while - but here is a link to the update data...
• Posted: 2009-02-01 23:53:39 By S B
• Sorry to all who were interested - it took a while to get things better organised... Rather than posting big messages to multiple forums, I decided to stick with the RNIB forum, which has the original post, showing how I worked things out - and the latest post, with a diary (roughly) of how things went/have been going, and a bunch more useful links, as well as a post with RPE65 specifics.
  
  Follow it here: http://www.rnib.org.uk/messageboard/thread.php?threadID=6243&topicSort=desc
  
  Good luck with it all!
  
  Steve.