Can’t say I’ve had this experience, but I’m right there with you. I don’t think I want a cure (or a miracle healing or whatever). For myself, I’ve never had full sight, so it wouldn’t be restoring anything (never had it in the first place), and I’m already living my best life. I certainly wouldn’t want to go haring off to Russia over some mystery cure that a friend of a friend says exists.

If I was going to join some kind of clinical trials (and there are a couple for my condition), I’d want to read the research, and know all the details about possibly side effects to make an informed decision. I’m not super worried about being cured, but I also want to keep all the sight I’ve got left.

Further, sighted people pushing for a cure, or a miracle (I’ve had several random strangers over the years want to pray over my eyes), is ableist as heck. It assumes that being blind is the literal worst, and we must need fixing. I’m not broken. I don’t need a cure, or healing, or a Jesus miracle or whatever. I may have problems but my blindness isn’t it (not inherently). I’m tired of people assuming we can’t be happy, healthy and fulfilled because our eyes don’t work like theirs.

I feel ya. Once a month I have to tell my mom "No, Mom, it's genetic, just like being tall or having blue eyes. You can't take a pill to cure your eye color or make you taller or shorter. And if they give me a transplant the cells in the new eyes will die too, because the problem isn't in my retina, it's in my genes."

Parents, huh? They want what's best for us so much that they'll fall for quackery and scams if there's a promise of hope. Your father just wants to be your hero. Please don't be too hard on him, his intentions are good. But he's in hero mode and heroes tend to leave a lot of collateral damage in their wake. Insist on peer reviewed studies of this new Russian cure. Ask your dad to find out why it is only available in Russia. With luck and a little bit of reverse psychology he'll realize this is not the miracle he thinks it is, and he'll get to be the hero for saving you from it.

Good luck, and let us know in awhile how you're doing.

Both of my brothers are blind and although I never suggested any cure for their genetic condition, i have often wished there was a cure. My late grandmother would clip articles and send them to them for anything even remotely related to eyesight. I’ve not considered them broken, but now I’m wondering if I’ve unintentionally said or done something to make them think that’s how I view them, broken. Thank you for this thread. I’ll be more aware of my actions.

My ophthalmologist told me that one his clients who had some remaining vision went to a clinic in Germany for a "cure" and came back to the US completely blind. Clinical trials managed by a reputable organization are one thing. What you're describing sounds like something else.

No, you aren't a prick. He's telling you you're "broken," and you aren't. I'd also be concerned that anything anyone tries to do with your eyes might make things worse. I don't know if you have any sight at all, but I know I'm working hard to maintain what I do have, and I wouldn't risk that for something untested. There are ways that this works, and what you're saying doesn't sound like it's legit.

I have Glaucoma, and it used to irritate me when people asked if my surgeries would make my eyes better. No, they are me fighting to keep it from getting worse. You are right; they can't fix optic nerves YET, but they are working on it, and if there were a legit trial, I'd be all over it but not yet.

Good luck to you, my friend!

First of all I wouldn't trust a Russian doctor in Russia either, whatever the version of the FDA is, I don't trust it. Some doctor with a pet theory's going to use you as a ginny-pig to prove it.

I'm fully blind, I like being me. But, you know, I also think that missing one of the five senses iss bad, and if there was a fully safe reliable cure, I'd take it, becauseI view blindness as a limiting disability. I could shoot guns and drive cars and do lots of stuff I can't do now.

But I'm not going to let some fucking Ruski chop on me, to make my father happy, that's not his body, that's your body.

Do not go to Russia.

You gotta tell your dad that you do not trust the Russians at all, and that you know he's sad your blind, and you understand that, but that you are very used to it and don't want to do this, and that you flat out will not.

So I know for my eye condition at least, there are quite a few scams where clinics claim they offer stem cell regeneration therapy for optic neuropathy and they are 100% scams, people have lost thousands of oney on them. I really feel for these people that have gone through the false hopes of that and getting scammed. I’m not 100% certain, but the Russian “cure” is certainly a scam, if a “cure” is found, it will be huge news, not confined to secrecy. I have no idea what they would do there. I’m sorry you’re going through this situation, people should just respect others wishes.

I'm indifferent on a cure. If it could magically happen one morning sure, I'll take it for practical reasons, but if it involves me actually doing anything... nah. I'm perfectly happy the way things are and no (hypothetical) potential cure (that doesn't exist) is worth any potential risk to my remaining vision.

If your dad's "drag you there" threat starts to turn into reality, please reach out to someone - anyone - a counselor at school, another adult, law enforcement, etc. because if he actually followed through with it, he could put you in a situation where some sketchy procedure is performed that ends up wrecking the remaining vision you do have.

If there were really a cure, it would be available at more places than one clinic in Russia.

I am a sighted person, but I browse here because I like learning about people who live much different lives than me.

You are not being a prick, your father is being incredibly inconsiderate. You say you are at a point where you can definitively say "I'm happy" and that's all that matters. I can't imagine what it would be like to be blind, but I know how stressful it is for someone to nag you about something you can't change. Reading these comments makes me so sad, you deserve to feel happy and confident in your own skin, regardless of what "disability" you have. And honestly, after learning a lot more about this community I would never say that being blind is a disability. It's just a different way of living.

Ignore your father, who is the one being a prick. Keep doing YOU.

Your dad is being a selfish bully and needs to be told as much.

My myopia is so severe that my retina tears holes in its own blood vessels and the only way to stop the bleeding is to get a needle shoved into my eyeball every five or so weeks and inject it with butt medicine (yeah that’s the technical term my doc used for laughs because it’s for treating colon cancer specifically) at this point any surgeries I need on my eyes will require an additional surgery to make sure the main surgery doesn’t accidentally blind me totally and all of it requires sharp things going in my eyeballs while I’m awake to experience it. I’m good. You’re not being a prick you’re being reasonable to not want to put yourself through something that may well amount to torture, if you’re happy with your life now then don’t put yourself through unnecessary medical trauma.

Honestly, I'd like a cure. But this Russian clinic is BS, and the fact that your dad is obsessing over it is BS. Sorry you have to deal with it.

can't you just ask him for the money and then spend some weeks in Russia, like, hanging out? Jokes aside, me and my GF have experienced this kind of "I want to cure you" bullshit. It went away after our families noticed it's pointless.

Do not go to Russia! It sounds like a terrible idea and really sketchy.

My dad occasionally brings up 'cures' he's read about on whackjob websites.

We won't leave it alone. My visual cortex is mostly dead tissue, if there was treatment to regenerate dead brain matter it would be world news.

I'd love a cure, but it's just not going to happen. If it does, I doubt it will be in my lifetime.

I wasn’t aware people could go to Russia right now with COVID anyway…