Hi Rahul, Yes, I did test positive for RP 65 gene at Sankara Naitralaya. Well, as regards the positive impact on an adult, my doctor at Sankara Naitralaya( who is an international authority on Retina) was cautiously optimistic. I mean, he said that we should wait for at least a couple of years. Till then things would settle down. Hopefully, the cost would also go down. Best Turab
On 9/3/18, Rahul Bajaj <rahul.bajaj10...@gmail.com> wrote: > > > Thanks, Turab. Do you have the RPE 65 mutation, though? I may be wrong, but > I don't recall you having LCA, too. > > I got my gene testing done for RPE 65 in 2007 at Sankara Netralaya which > came back negative. I don't think it is possible to test for any other LCA > gene in India at this juncture. > > I am skeptical about the impact of this treatment on an adult, but news > reports indicate that a 44-year-old man from Seattle was given the treatment > last year. On the issue of efficacy, I posted this question on a Facebook > group. The parent of a child who has undergone treatment says that the > child's vision has improved to a point where he can identify fallen coins on > the floor and his visual acuity in the better eye has improved from 20/600 > to 20/60. Sent from my iPhone > >> On Sep 3, 2018, at 10:06 AM, turab chimthanawala <turab...@gmail.com> >> wrote: >> >> Hi Rahul, >> Well we have been following the evolution of this course of treatment >> since about six years now (since when it was in Phase III). My mom has >> been in contact with the Trial administrator. My mom tried very hard >> to get me in the Phase III trial. Despite registering well in advance >> and even sending my gene sample to the University of Philadelphia, we >> couldn't get through the red tape: they only preferred American >> patients. We have even visited Dr. Bath liroea the other doctor(apart >> from Dr. Albert and Dr. Jeane) involved in developing in the treatment >> in 2015. As per the results of the trials he seemed very optimistic: >> as they were patients who could zebra crossings at night. >> Now, the treatment has been approved. >> As per my opthamologist, Dr. LG at Sankara Naitralaya, only 24 people >> worldwide have availed the treatment. >> He was optimistic of the cost significantly going down as the numbers >> increase. >> Best >> Turab >> >> >> >>> On 9/3/18, Ved <vedprakash.sha...@gmail.com> wrote: >>> The article is not authentic. Presently, no gene therapies have been >>> recommended for the V I. of course, some trials have been taken place >>> but >>> they did not show expected results. I have good relations with a reputed >>> eye >>> specialist. I keep on sending links of such article to him. His response >>> is >>> not very enthusiastic. In his opinion, no treatment have since been >>> recommended with regard to gene therapies in the field of vision related >>> diseases. >>> >>> -----Original Message----- >>> From: AccessIndia [mailto:accessindia-boun...@accessindia.org.in] On >>> Behalf >>> Of Rahul Bajaj >>> Sent: Monday, September 03, 2018 12:13 AM >>> To: accessindia@accessindia.org.in >>> Subject: [AI] Let there be sight | health >>> >>> A fascinating piece. This concerns my eye condition, but I do not have >>> this >>> genetic mutation. >>> Given the cost of Rs. 5.38 crore, this may just be of academic interest >>> for >>> most of us at this juncture. I am wondering, however, if people would >>> opt >>> for this 'cure', in the event that it applied to their condition. >>> https://www.theweek.in/health/more/2018/08/31/let-there-be-sight.html >>> >>> >>> Sent from my iPhone >>> >>> >>> >>> Search for old postings at: >>> http://www.mail-archive.com/accessindia@accessindia.org.in/ >>> >>> To unsubscribe send a message to >>> accessindia-requ...@accessindia.org.in >>> with the subject unsubscribe. >>> >>> To change your subscription to digest mode or make any other changes, >>> please >>> visit the list home page at >>> http://accessindia.org.in/mailman/listinfo/accessindia_accessindia.org.in >>> >>> >>> Disclaimer: >>> 1. Contents of the mails, factual, or otherwise, reflect the thinking of >>> the >>> person sending the mail and AI in no way relates itself to its veracity; >>> >>> 2. AI cannot be held liable for any commission/omission based on the >>> mails >>> sent through this mailing list.. >>> >>> >>> >>> >>> >>> Search for old postings at: >>> http://www.mail-archive.com/accessindia@accessindia.org.in/ >>> >>> To unsubscribe send a message to >>> accessindia-requ...@accessindia.org.in >>> with the subject unsubscribe. >>> >>> To change your subscription to digest mode or make any other changes, >>> please >>> visit the list home page at >>> http://accessindia.org.in/mailman/listinfo/accessindia_accessindia.org.in >>> >>> >>> Disclaimer: >>> 1. Contents of the mails, factual, or otherwise, reflect the thinking of >>> the >>> person sending the mail and AI in no way relates itself to its veracity; >>> >>> 2. AI cannot be held liable for any commission/omission based on the >>> mails >>> sent through this mailing list.. >>> >> >> >> >> >> Search for old postings at: >> http://www.mail-archive.com/accessindia@accessindia.org.in/ >> >> To unsubscribe send a message to >> accessindia-requ...@accessindia.org.in >> with the subject unsubscribe. >> >> To change your subscription to digest mode or make any other changes, >> please visit the list home page at >> http://accessindia.org.in/mailman/listinfo/accessindia_accessindia.org.in >> >> >> Disclaimer: >> 1. Contents of the mails, factual, or otherwise, reflect the thinking of >> the person sending the mail and AI in no way relates itself to its >> veracity; >> >> 2. AI cannot be held liable for any commission/omission based on the mails >> sent through this mailing list.. > > > > > Search for old postings at: > http://www.mail-archive.com/accessindia@accessindia.org.in/ > > To unsubscribe send a message to > accessindia-requ...@accessindia.org.in > with the subject unsubscribe. > > To change your subscription to digest mode or make any other changes, please > visit the list home page at > http://accessindia.org.in/mailman/listinfo/accessindia_accessindia.org.in > > > Disclaimer: > 1. Contents of the mails, factual, or otherwise, reflect the thinking of the > person sending the mail and AI in no way relates itself to its veracity; > > 2. AI cannot be held liable for any commission/omission based on the mails > sent through this mailing list.. > Search for old postings at: http://www.mail-archive.com/accessindia@accessindia.org.in/ To unsubscribe send a message to accessindia-requ...@accessindia.org.in with the subject unsubscribe. To change your subscription to digest mode or make any other changes, please visit the list home page at http://accessindia.org.in/mailman/listinfo/accessindia_accessindia.org.in Disclaimer: 1. Contents of the mails, factual, or otherwise, reflect the thinking of the person sending the mail and AI in no way relates itself to its veracity; 2. AI cannot be held liable for any commission/omission based on the mails sent through this mailing list..
