Lebers congenital amourosis

[yogi1970]

My daughter is suffering because of vision disorder & is diagnoised lebers congenital amaurosis after doing ERG test.All other developments are normal.

Is there any treatment for Lca?
What kind of treatment can we expect in future?
What are the precautions to be taken to improve my daughters overall conditions?  


This discussion is related to Lebers Congenital Amourosis, treatment of, and retinal and macular scarring.

[John C Hagan III, MD, FACS]

This is one of the best articles I was able to find. Paste the link in your internet browser:

http://children.webmd.com/lebers-congenital-amaurosis


JCH III MD

[Rachel423]

I have a 6 year old who has LCA.  There is a lot of information out there now about LCA.  I would suggest going to the website:  Foundation for Retinal Research (www.tfrr.org).  You can read latest research updates, meet other families, learn more about LCA, etc.  It's a great resource.  My son has very little vision - it has been called "form perception".  He can tell something is there, but can not 'see' any details.  He's very bright, sweet and lots of fun and goes to a regular kindergarten.  He reads braille and uses a cane.  I have every reason to believe he'll have a successful, fulfilling, fun & healthy life.  There is also plenty of reasons to be hopeful for a cure.  There is currently a clinical trial going on for gene therapy for one type of gene mutation that causes LCA (RPE65).  Good luck!

[John C Hagan III, MD, FACS]

Thanks for the information. JCH MD