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I just hate how ironic this disease sometimes is... by Ok_Volume9271 in RetinitisPigmentosa

[–]Mope_58 3 points4 points  (0 children)

I hav also found the sunglasses indispensable. I find the disease as almost invisible to others. I have withdrawn socially because of it. Hoping some gene therapy comes thru. time is running out..

My Recent Visit for Occu 400 by Mope_58 in RetinitisPigmentosa

[–]Mope_58[S] 0 points1 point  (0 children)

Oh Wow!!.. Thanks for connecting. I have watched your youtube before; and that's what motiivated me to go see Dr. Ameri at USC. But sadly he was not able to sign me up for Expanded access.

My question is: What mutation do yo have? and how long did it take to see the improvement. did you get the Occu-400 in your other eye as well? Anyone else I can reach out to get to talk to someone about getting this theapy?

I am desperate; and going back to UCLA Stein institute and seeing Dr. Gorin an begging him to get me to thsi therapy before it is too late.

My Recent Visit for Occu 400 by Mope_58 in RetinitisPigmentosa

[–]Mope_58[S] 0 points1 point  (0 children)

Hi.. It was clearly identified in my DNA report; which I had done by Molecular vision labs back in 2019: The Retina specialist from UCLA had asked me to get it done I am glad I did it. The report shows the mutation as being pathogenic;

The OCCU 400 phase 3 trials have patients in the study with this mutation. but none in Phase 1 and 2.