Self-driving car when?

There are some gene therapies on the market. I guess I'd say I'm cautiously optimistic, but try not to think about it as much as possible. Every now and then I go down a rabbit hole and read some press releases and papers. Kind of does feel like they're always 5 years away from everything.

I think it’s great for the people who care/want this to become a reality, however I can’t live my life hoping for a cure that as far as I know just doesn’t exist and never will. Waiting for something like that just isn’t living. Also, I’m a wuss and I don’t know how to live not being legally blind. But there are others who really want this and I’m very happy to think that one day something like this could make them very happy

Pretty excited. According to a scientist there's been more progress into potential vision restoration in glaucoma in the last 5 years of research than in the previous 50. It's already been shown in a mouse model that it's possible to revert the biological clock of existing retinal ganglion cells to a very early stage short of becoming stem cells in which they can still regrow their damaged axons and restore vision, which is good for people who still have living, even if damaged, optic nerve cells. However for people like me who have lost all their optic nerve cells the restoration is much farther away, and the earliest I've heard scientists estimate puts human trials at the end of this decade or beginning of the next.

I really wish to regain sight some day. My life isn't entirely suspended since I'm still enjoying it, but not even close to as much as I used to enjoy it with sight. I'm also hopeful that my country's national healthcare service will pay for my vision restoration once it becomes available to the general public. They did pay for my surgeries abroad when I was born to stabilize my glaucoma, so I'm really hopeful that I can take advantage of that privilege again.

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Can't say I'm overly thrilled... I mean, doctors going off about how advanced technology and genome sequencing is nowadays that they were able to diagnose me with a genetic mitrochrondrial disease, which they wouldn't have been able to do before.

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No idea how to fix it though... so it's kind of like, "with all of our cutting edge technology we can tell you exactly what's wrong with you, and it's pretty bad, but we have no idea how to fix it. but anyway, thanks for coming by, sleep tight!"

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I don't know, there's kind of a part of me that wishes I would have never known.

There is a gene therapy called Luxturna. It treats a specific gene of the RP but it is 400k per eye.

I was born blind so I really don't care about this stuff. I'm fine being blind and I don't necessarily feel like I'm missing out on much. It also helps that I'm incredibly set with my life due to certain circumstances.

I'll take it when it comes. If I'd stopped to wait for it, I'd have wasted the last twenty years.

Are you referring to medical research or assistive ICT? I place my hopes in solutions like orcam, eSight, screen readers and OCR tools which help me live a better quality life right now.

I try to attend webinars with panels of scientists who are actively working on gene therapy and they seem to be making real progress. One I attended last month was even talking about a less invasive invetreal injection rather than sub- retinal of the replacement gene. I think it is very likely to have a cure for at least some types of blindness sooner than I used to think. The big hurdle is the price tag.

If anyone is wondering I gain access to these webinars through myretinatracker.com AMD Foundation Fighting Blindness

My bkindness is from brain trauma so I rely on technology advancements to get through. I have several aids already and help test things as well. Saturday I test a keyboard for computers that are for blind and low vision that has no screen for example...ready to check this out...

Skepticism

I’ll believe it when I see it. As you mentioned it’s like it’s coming but then don’t come. There’s research interesting but I’ll see the results when it’s produced.

I think it’s great!

Even if I won’t be able to use the stuff in the future, I don’t know, it’s great there’s being breakthroughs in this stuff.

It would be nice, but I’m not holding my breath. I am hopeful one day they will come up with something, but chances are they will be after my lifetime.

Edit to my initial question: Thanks for your comments. I see that you made similar experiences. When I was diagnosed about 10 years ago, I went to the specialist and did all the testing. After all the tests, I was to told that I have RP and that there is not much one can do about it... see you next year...

In the meantime I was referred to IOB, Switzerland's leading institute for vision impairment. It appears to me that they have a completely different approach. Every time I am there they talk about new treatments, medication and therapies that may or may not be available in the distant or not too distant future.

One of the staff there explained me that there are two main drivers for the latest increase in research. One is the technological advancement in general and the other is the increasing number of patients with degenerative eye diseases. Higher number of patients means potential higher revenue, hence more attractive for pharmaceutical companies.

Personally I am optimistic that there will be treatments or artificial devices available sometimes in the future. If not for me then at least for my children. I hope they don't have to have the same discussions we have.