Blind and Visually Impaired Community
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My 7 Year old Sister is going blind.. (self.Blind)
submitted 9y ago by [deleted]
Hi /r/blind,
I never really thought I'd be posting here, but I'm in need of some guidance/advice. My little sister is 15 years my junior, and has always had bad eyesight. When she first learned how to walk, she would get up in the middle of the night and walk into walls. Shortly after, she started to go cross-eyed, so we took her to the opthometrist. She has had thick, thick glasses since she was 3 or 4, probably.
Today, she was diagnosed with retinitis pigmentosa, which (as far as we know) means she will eventually be blind. This is devastating news, and even though we haven't been to the specialist yet, we are preparing for the worst.
Here's why I came here:
- Have you or a family member gone blind at a young age, and how did your family tell you? How did you feel? I want her to know that we support her in the fullest, and I don't want her to feel scared or alone. We have not told her anything yet.
- Do you know anyone with RP and is there anything you can share about the disease? We've been reading stuff all morning, but any information helps.
- Anything else you think would be helpful information to know would be greatly appreciated. We really have no idea how to deal with this at this point.
I never really thought I'd be posting here, but I'm in need of some guidance/advice. My little sister is 15 years my junior, and has always had bad eyesight. When she first learned how to walk, she would get up in the middle of the night and walk into walls. Shortly after, she started to go cross-eyed, so we took her to the opthometrist. She has had thick, thick glasses since she was 3 or 4, probably.
Today, she was diagnosed with retinitis pigmentosa, which (as far as we know) means she will eventually be blind. This is devastating news, and even though we haven't been to the specialist yet, we are preparing for the worst.
Here's why I came here:
- Have you or a family member gone blind at a young age, and how did your family tell you? How did you feel? I want her to know that we support her in the fullest, and I don't want her to feel scared or alone. We have not told her anything yet.
- Do you know anyone with RP and is there anything you can share about the disease? We've been reading stuff all morning, but any information helps.
- Anything else you think would be helpful information to know would be greatly appreciated. We really have no idea how to deal with this at this point.
DanKolar62 4 points
As a start, Google with a string including your city or state and "services for the blind". In the first few hits, you should find the various agencies and NGOs that exist to help you.
tetrapharmakos_ 2 points
thank you!
DanKolar62 1 points
Good luck. The blind community is a vigorous society. You will be surprised by it. And they have a saying: *I'm blind—not stupid.*
tetrapharmakos_ 2 points
I had an assignment to shadow someone with a disability last semester (for my Therepeutic Rec class) and he was blind, and very active in the blind community around here. We talked pretty extensively and I remember him saying that more than once. I've already contacted him to ask advice, so maybe he can be of some help. :)
DanKolar62 2 points
The biggest problems tend to be perceptual. That is, others are sure that you must have a problem, therefore, you have a problem. So it goes...
dmazzoni 2 points
Where do you live? I'd love to help recommend specific organizations that can help!
Top priority - she should start learning braille now! It's easier to learn at a young age, but a lot of people don't realize this and wait until they go completely blind.
Top priority - she should start learning braille now! It's easier to learn at a young age, but a lot of people don't realize this and wait until they go completely blind.
LazyAssRuffian 1 points
My 7 year old son was diagnosed with a similar disease last year. His is called FEVR and is degenerative as well. He still has decent vision, about 20/80 in each eye with glasses, but after some back and forth his school assigned him a TVI who immediately began teaching him braille. If she is in school, the district can help you find some assistance. Good luck!
tetrapharmakos_ 1 points
We live in the Quad Cites, on the Iowa side. And thanks for the advice!
dmazzoni 2 points
OK, check out the National Federation of the Blind of Iowa: http://www.nfbi.org/ - that's definitely a great place to start. There are incredible resources in Chicago if you can get there from time to time.
PM me if you'd like a personal introduction to someone.
PM me if you'd like a personal introduction to someone.
jogajaja 1 points
Hi OP-
I'm sorry to hear about the diagnosis of RP. I imagine this is very scary to hear about for your sister and your family. Here are some of my thoughts:
1) Wait until you see a specialist. There are so many different types of RP that I think you're putting the cart before the horse a little bit. Yes, many people do end up going blind, but not all do, and honestly those who acquire it later in life tend to see a more rapid deterioration into blindness.
2) Find a support group, such as those that have already been suggested. Your local Lions club can also point you to some good resources as well; I am also pretty "connected" with some folks in Iowa who can help you, if you'd like. PM me.
3) once you get the diagnosis, alert your school immediately. They will get you hooked up with a TVI, and he/she will be a wealth of information for you. The TVI can decide if/when to start braille, and will also start working with your sister on daily living skills, making sure she gets access to large print if she needs it, etc. as well as making sure the family is doing okay.
4) PM me with any questions you have. I'm a TVI, so I'm used to this stuff. Please don't think I'm being flippant - I'm just trying to get you to relax a bit until you know what you're dealing with. You could also go over to the optometry reddit, but they'd probably want to know which genotype it was. They could definitely tell you more about it though. =)
I'm sorry to hear about the diagnosis of RP. I imagine this is very scary to hear about for your sister and your family. Here are some of my thoughts:
1) Wait until you see a specialist. There are so many different types of RP that I think you're putting the cart before the horse a little bit. Yes, many people do end up going blind, but not all do, and honestly those who acquire it later in life tend to see a more rapid deterioration into blindness.
2) Find a support group, such as those that have already been suggested. Your local Lions club can also point you to some good resources as well; I am also pretty "connected" with some folks in Iowa who can help you, if you'd like. PM me.
3) once you get the diagnosis, alert your school immediately. They will get you hooked up with a TVI, and he/she will be a wealth of information for you. The TVI can decide if/when to start braille, and will also start working with your sister on daily living skills, making sure she gets access to large print if she needs it, etc. as well as making sure the family is doing okay.
4) PM me with any questions you have. I'm a TVI, so I'm used to this stuff. Please don't think I'm being flippant - I'm just trying to get you to relax a bit until you know what you're dealing with. You could also go over to the optometry reddit, but they'd probably want to know which genotype it was. They could definitely tell you more about it though. =)
efarber8 1 points
I'd suggest looking at the Foundation Fighting Blindness website (blindness.org). They are a non-profit that can help you find a community and resources in your area. I am 22 and have RP so feel free to PM me if you have any other questions.
dmazzoni 1 points
Keep in mind that the primary goal of the FFB is to raise money to prevent, treat, and cure certain types of blindness. That's great and I'm fully supportive of it - but resources to help people live a great life despite being blind is not their priority.
Some people who were born blind hate the FFB because they know they can't be "cured" - if you've never had any vision, even if a cure was found your brain would never be able to process it. They don't see themselves as disabled people who want to be cured, they want to be treated equally.
The National Federation of the Blind, in contrast, is run by blind people, for blind people, with the goal of helping blind people with skills, education, and resources so their lives are just as rich and full as everyone else's. That organization - and others like the ACB and the Braille Institute - are having a much greater immediate impact.
Some people who were born blind hate the FFB because they know they can't be "cured" - if you've never had any vision, even if a cure was found your brain would never be able to process it. They don't see themselves as disabled people who want to be cured, they want to be treated equally.
The National Federation of the Blind, in contrast, is run by blind people, for blind people, with the goal of helping blind people with skills, education, and resources so their lives are just as rich and full as everyone else's. That organization - and others like the ACB and the Braille Institute - are having a much greater immediate impact.
efarber8 1 points
I agree that the NFB is a great resource and I'm glad that you recommended it for OP.
Since OP's sister was diagnosed with RP, I think that FFB would also be a great resource; RP is a primary research area for the FFB. In my experience, FFB has been a great resource for clinical information and keeping up to date with research. It has also provided me with a community of people living near me who have the same disease.
Since OP's sister was diagnosed with RP, I think that FFB would also be a great resource; RP is a primary research area for the FFB. In my experience, FFB has been a great resource for clinical information and keeping up to date with research. It has also provided me with a community of people living near me who have the same disease.
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