going blind

[friendscare]

I hate this. Three years ago my parents took me to some fancy eye doctor and we found out that I have a genetic disease where you go blind called Retiniga Pigmatosa (sp?). I didn't really want to know this. Now i have to live with the fact that I am going blind and there is nothing I can do about it. I am scared, and feel like my friends just don't understand.

[sincerely-hers-truly]

Have you gone to a different doctor for a second opinion? I don't want to raise any trouble, but a quick internet search tells me that there might be a surgery that stops the disease.

Aside from that, you are strong. You are a strong individual with infinite potential. You needn't be hindered by your sight. There are many options out there for people who are visually impaired. You might also want to see if there are any groups in your area of people going through the same kind of thing. It will help to meet other people who are in or have been in your shoes!

[Marshmellow]

Hi,

I'm sorry you're going through this. I have to live with the fear that my retina could detach, too; because I was born with congenital cataracts and have since had implants. I have yearly screenings to make sure nothing is wrong.

Based on research, it appears that depending on how advanced your case is, you could have surgery. Did the doctor tell you that? I would strongly recommend, like the poster above, getting a second opinion or asking if there's anything that could be done to prevent or to reverse any damage.

Best wishes.

[Kitty.]

Hey,

I'm sorry that you are going through this. It must be very difficult for you.

A google search told me that a daily intake of Vitamin A palmitate can postpone blindness for up to 10 years. I encourage you to ask your doctor about this and he/she can give you an amount that you should take daily. I also read that DHA can help as well.

There are also microchips, gene therapies, and much more things that could definitely be available in the future, so don't give up hope.

[friendscare]

Hey guys, thank you all. I have the dominant form of the disease, which they have not done as much research with. I have gotten two opinions, plus my regular eye doctor does yearly tests to track the progression of the disease. He has even showed me pictures of my deteriorating retina...pretty nasty...

My dad, uncle, and grandpa all have it and I have watched their sight get worse as I grow up, especially my dad's, he went from reading us chapter books, to now he has a guide dog and can't read at all.

Thank you so much for the support and helpful advice

[Kira-Kira]

i understand what ur going throu i went blind i still have particail vision but i can lose it and it is scary but there is technology out there that will help you idk how old u are so i cant really give u to many opitons but i use so many neat things enlarged books to keep my vison and not stress my eyes there magnifiers even vi class at my school prepare so if u do go blind u will be prepare learn braille its fun to learn to if u need to pm go ahead i will help u thru it its not easy to go throu alone

[friendscare]

Thank you very much corrina, I just might take you up on that offer soon.

[MegaMadness]

I totally understand where you are coming from and all the emotions you might be experiencing. I personally don't have Retina Pigmentosa but I do have Glaucoma, caught early though, and it is treatable kinda so I don't understand completely though there is still a chance I could go blind in the future.And it gets me down sometimes and I get scared about it, but now I try to stay postive. Because loads of people who are blind still have great lives and are very sucessful. You can't let it bring you down. Maybe practise reading brail to help you get ready for the time where you do go blind. I hope this helped.

[Kira-Kira]

your welcome if u need anything else just pm me anytime ill try my best to get back

[Berries and Cream]

I'm sorry you're going through this. Remember to always stay strong and keep up your spirits during this difficult time. You do have so much potential in the world
Maybe you can join a support group where you can relate with others? Turn this around, hopefully, in a postive way. Talk to others that you trust and ask them to help you when you're having trouble. It's perfectly okay to ask for help. Read books with large font, ask for help from your teachers and let them know what is going on if they don't already know and maybe practice Braille. Please don't feel afraid because you are not alone Feel free to PM me if you want to talk

[Agent P]

Hey there, there's always the option of fixing the problem, though sometimes that isn't entirely possible. Though there's always a chance, so maybe try consulting with your eye doctor again to see ways of preventing it from getting worse or delaying the worsening of it. Maybe even stopping it completely.

Though being blind or having impaired vision isn't stopping you from doing anything either, dear. Look here, it's a list of people that pursued what they wanted to with blindness or had done something great before becoming blind. So just because you have a higher chance of it doesn't mean that you can't be just as amazing as you are now! Some of those people were authors, inventors, painters, singers, musicians, poets, athletes, artists. Your vision definitely will not stop you from doing what you want to do, maybe you just have to do it a bit differently, but that doesn't mean you can't do it at all!

Take care, dear.

[Kate*]

I have lost count of the number of things wrong with my eyes, at last count I think it was 6 or 7. I know what it's like to fear going blind, I live with the fear almost everyday and I've had 4 doctors throughout my life tell me that nothing can be done to fix the underlying problem. Even stem cells aren't treating it yet. I don't know exactly what it's like, but if you need to talk PM me.

[Lu82]

Im sorry for what youre going through.Just stay strong i google the disease and apparently you can reduce the progression of the disease by a daily intake of 4.5 mg of Vitamin A palmitate and they also mention that recent studies have shown to a proper Vitamin A supplementation can postponed blindness for up to 10 yrs.And it also mentions something about retinal transplants and artificial retinal implants.