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
>>
>>
>>
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