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• cone rod dystrophy
• Posted: 2007-10-08 22:19:29 By bella d
• any specialist who can cure this

• Re: cone rod dystrophy
• Posted: 2007-11-18 13:52:04 By Carol C
• Bella, my brother has X-linked cone-rod dystrophy, classified with the RP's because the gene for it rides in same area as X-linked RP's, but the symptoms are somewhat different. He is involved in new research,has had an implant put into one retina that is producing CNTF (ciliary neurotrophic factor), and releasing it into his eye. They have had very good results with this in rats, mice, cats, and dogs, so now humans can participate. He is considered late-stage. The implant was on Sept.21, and as of last week, he is having remarkable progress. He can now see more than one word at a time with reading, can accomplish this without his glasses, and has noticed that while watching TV, he can see the area of his lap, which he could not before. He will have the implant for one year, than it must be removed. I read about a man in the first(safety) phase of this who had dramatic improvement in acuity, which he retained more than one year after the implant was removed. SO, although no one can cure the genetic component, if this idea becomes a treatment, and blindness can be avoided, it's as good as a cure! The idea behind it is that the retina cells are not dead, but dormant. If you search on the Web for "ciliary neurotrophic factor", you will find things to read ( in English, I don't know where you live). If you read the Retinitis pigmentosa board, others are talking about this, and I am posting updates on his experience, which looks really,really hopeful at this time. Carol C.