Blind and Visually Impaired Community
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[deleted by user] (self.Blind)
submitted by [deleted]
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505Griffon 2 points 1y ago
Wow, at least the mystery is solved. You can read up on your condition and learn how to live with it.
I'm in my late 50's and noticed vision issues in my early 30's. Basic response was diagnosis of RP. Other than visual field tests, nothing else was ever done. As my kids are old and soon to be married, I'm considering DNA testing to see if I passed anything on to them and the chances they could to their future children.
Any advice on how and where you got tested. I have no local retinologist just a plain GP. I suspect I may need to go through a doctor to have my insurance cover it but aren't opposed to pay out of pocket being in a high deductible plan.
Any info would be greatly appreciated.
I'm in my late 50's and noticed vision issues in my early 30's. Basic response was diagnosis of RP. Other than visual field tests, nothing else was ever done. As my kids are old and soon to be married, I'm considering DNA testing to see if I passed anything on to them and the chances they could to their future children.
Any advice on how and where you got tested. I have no local retinologist just a plain GP. I suspect I may need to go through a doctor to have my insurance cover it but aren't opposed to pay out of pocket being in a high deductible plan.
Any info would be greatly appreciated.
JackEsq 6 points 1y ago
If you are in the US there is the $1. Which offers free genetic testing for those diagnosed with Inherited Retinal Diseases such as RP.
[deleted] [OP] 3 points 1y ago
[deleted]
505Griffon 1 points 1y ago
Thank you so much for the information and detailed response. I signed up for the My Retinal Tracker a few years ago and get feedback every so many months. I wasn't aware they did DNA testing.
Spark Therapeutics underwrites the funding for the Invitae testing program, They receive the test results as part of the program. They have some RP gene therapy treatments that cost $400,000 per eye. Insurance might pay for it but never checked it out.
Thanks again for all the information as now I have a new project to dive into.
Spark Therapeutics underwrites the funding for the Invitae testing program, They receive the test results as part of the program. They have some RP gene therapy treatments that cost $400,000 per eye. Insurance might pay for it but never checked it out.
Thanks again for all the information as now I have a new project to dive into.
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