Blind and Visually Impaired Community
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Recently diagnosed with glaucoma (self.Blind)
submitted by XcessivGuy
Hi I'm 22, been diagnosed with glaucoma and I'm lookin for advice for those who have a similar case,
I know people are different in ways this affects people. How did you cope with this?
I'm so scared cos I'm only 22. I got my whole life still ahead of me and losing eyesight is such a big thing in my life.
Any advice, anything...
I know people are different in ways this affects people. How did you cope with this?
I'm so scared cos I'm only 22. I got my whole life still ahead of me and losing eyesight is such a big thing in my life.
Any advice, anything...
SpoilerAlert6 5 points 6y ago
My significant other has had glaucoma since she was 16, and lost most of her sight by 19. She's been living like this for almost 10 years, so I'll transcribe while she speaks.
1) Find a good glaucoma Specialist. We mean a really good one. You want to build a relationship with this doctor because you will be seeing this person much in the future. If you don't feel comfortable with this doctor we recommend finding another. This doctor will be the person that you trust with your sight for now on. You need to be able to trust them.
2) Take your meds. You're aiming to preserve as much vision as you can. You'll most likely be on a few eyedrops and a pill. Take these on a religious-like schedule. Don't skip, but if you do forget (we all do from time to time) then just make sure to pick it back up on your next time that you're supposed to take them.
3) Connect with your state agencies. It depends on your state though. Some states will have more resources that can help you with your disability. We moved to Washington a year and a half ago and it's better compared to where we used to live back down in Tennessee. Most states will have the services for the blind under a larger service, such as DHS (Department of Human Services), while Washington has its own department known as DSB, the Department of Services for the Blind. Depending on the state once again, they can potentially also help you learn how to maneuver with a cane and even teach you how to cook.
4) Try to connect to other people that are going through similar situations. Not everyone has the same level of vision loss, but we can all relate to not recognizing a face, but you can hear a familiar voice. This will help you gain more advice, tips, potential resources, and the best thing yet... friends. Just like any other person, we need other people in our lives. There's the National Federation for the Blind and the American Federation for the Blind if you want additional tips and potential help. We're not too familiar on those two though to be honest.
5) If you're in school then get in contact with your college's disability service. They will provide you with accommodations and assistance.
6) This is important. Don't let people coddle you. Don't let people get you down. People will underestimate you. People will discourage you from doing things in life, but don't let them get you down.
We hope some of these help, and if we think of anything else we'll try to post more. Good luck.
1) Find a good glaucoma Specialist. We mean a really good one. You want to build a relationship with this doctor because you will be seeing this person much in the future. If you don't feel comfortable with this doctor we recommend finding another. This doctor will be the person that you trust with your sight for now on. You need to be able to trust them.
2) Take your meds. You're aiming to preserve as much vision as you can. You'll most likely be on a few eyedrops and a pill. Take these on a religious-like schedule. Don't skip, but if you do forget (we all do from time to time) then just make sure to pick it back up on your next time that you're supposed to take them.
3) Connect with your state agencies. It depends on your state though. Some states will have more resources that can help you with your disability. We moved to Washington a year and a half ago and it's better compared to where we used to live back down in Tennessee. Most states will have the services for the blind under a larger service, such as DHS (Department of Human Services), while Washington has its own department known as DSB, the Department of Services for the Blind. Depending on the state once again, they can potentially also help you learn how to maneuver with a cane and even teach you how to cook.
4) Try to connect to other people that are going through similar situations. Not everyone has the same level of vision loss, but we can all relate to not recognizing a face, but you can hear a familiar voice. This will help you gain more advice, tips, potential resources, and the best thing yet... friends. Just like any other person, we need other people in our lives. There's the National Federation for the Blind and the American Federation for the Blind if you want additional tips and potential help. We're not too familiar on those two though to be honest.
5) If you're in school then get in contact with your college's disability service. They will provide you with accommodations and assistance.
6) This is important. Don't let people coddle you. Don't let people get you down. People will underestimate you. People will discourage you from doing things in life, but don't let them get you down.
We hope some of these help, and if we think of anything else we'll try to post more. Good luck.
KillerLag 3 points 6y ago
Everything /u/SpoilerAlert6 said! But especially, ESPECIALLY take your meds as directed.
Another thing to add, vision loss from glaucoma has no pain (depending on the form of glaucoma. Closed angle causes extreme pain and is counted as a medical emergency). So visit your doctor regularly and have them check the pressure and do the fields test as necessary.
One more important thing, too. Over time, some forms of glaucoma meds can cause cataracts, which would cause a different kind of vision loss. However, cataract surgery is generally fairly safe. You will want to talk to your doctor about that and discuss when that surgery may be needed (that generally takes a fair number of years to form, though)
Another thing to add, vision loss from glaucoma has no pain (depending on the form of glaucoma. Closed angle causes extreme pain and is counted as a medical emergency). So visit your doctor regularly and have them check the pressure and do the fields test as necessary.
One more important thing, too. Over time, some forms of glaucoma meds can cause cataracts, which would cause a different kind of vision loss. However, cataract surgery is generally fairly safe. You will want to talk to your doctor about that and discuss when that surgery may be needed (that generally takes a fair number of years to form, though)
Vaelian 2 points 6y ago
Don't panic. Just because you have glaucoma it doesn't mean you're going blind any time soon. I have a severe form of congenital glaucoma and my vision was stable for 29 years on medication. Just make sure you take your meds and you will most likely be fine.
XcessivGuy [OP] 1 points 6y ago
Thanks for contribution, it must be very hard for you and everyone. How is your sight now, and if it's not too personal what age were you and how old would you be now? How was it detected? Routine Eye exam or did you feel there was something wrong? (Ie nausea, headaches, irritated eyes?)
Vaelian 1 points 6y ago
I'm 34 and have been completely blind since I was 31. My vision started to deteriorate (mainly losing contrast and color perception) when I was 29. I was born with glaucoma and it was detected very early because there was something wrong with my corneas. Surgeries managed to save my right eye which remained stable for 29 years until the pressure got out of control even with more surgeries and at maximum medication.
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