Blind and Visually Impaired Community
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25 yo with macular degeneration (self.Blind)
submitted by gunther_icebird
Sorry in advance for the long post. Not sure how much background is necessary/helpful, so I put a more detailed description of what I have going on at the bottom.
I'm sort of at a loss because I have a relatively rare genetic disorder affecting my eyes, and none of my doctors are able or willing to tell me anything about what to expect in the coming years. I currently have no hope for treatment, and I'm fairly sure I will be significantly visually impaired in the next 5 years (unable to drive, significant difficulty reading, etc.), based on how my vision has deteriorated in the last 2 years.
I am hoping to connect in some way with other people who have had or are having a similar experience, but not sure the best way to do that. I have also come to realize that I am extremely ignorant about anything related to being blind/visually impaired, and I hoped that y'all might be able to answer some questions.
I am very interested to know how some of you have dealt with losing your vision in adulthood? Were there some things that were easier to learn or deal with than you expected, things that were harder?
How has it impacted your ability to work? I do administrative work in front of a computer all day, so I hope to be able to continue with proper accommodation, but I find it difficult to imagine what it would actually be like.
Background on me:
I am 25 years old and was diagnosed two years ago with a non-specific form of macular dystrophy. My doctors have conducted all of the genetic testing that is currently available to diagnose this kind of thing (so I'm told), and have come up with nothing. It's not Stargardt's, and as the disease progresses it has all the classic signs of age-related macular degeneration, expect I'm only 25. I technically still see 20/20 with corrective lenses; however, my vision is significantly distorted in both eyes (tons of wavy lines on amsler grid) and I have a large atrophied area of my retina that has resulted in a blind spot in my left eye. I sort of see double when trying to read road signs that are farther away. All of these issues have developed in the last two years, so I am very anxious about what the next 2-5 years will bring for my vision and when I will lose the ability to drive, read, etc.
I'm sort of at a loss because I have a relatively rare genetic disorder affecting my eyes, and none of my doctors are able or willing to tell me anything about what to expect in the coming years. I currently have no hope for treatment, and I'm fairly sure I will be significantly visually impaired in the next 5 years (unable to drive, significant difficulty reading, etc.), based on how my vision has deteriorated in the last 2 years.
I am hoping to connect in some way with other people who have had or are having a similar experience, but not sure the best way to do that. I have also come to realize that I am extremely ignorant about anything related to being blind/visually impaired, and I hoped that y'all might be able to answer some questions.
I am very interested to know how some of you have dealt with losing your vision in adulthood? Were there some things that were easier to learn or deal with than you expected, things that were harder?
How has it impacted your ability to work? I do administrative work in front of a computer all day, so I hope to be able to continue with proper accommodation, but I find it difficult to imagine what it would actually be like.
Background on me:
I am 25 years old and was diagnosed two years ago with a non-specific form of macular dystrophy. My doctors have conducted all of the genetic testing that is currently available to diagnose this kind of thing (so I'm told), and have come up with nothing. It's not Stargardt's, and as the disease progresses it has all the classic signs of age-related macular degeneration, expect I'm only 25. I technically still see 20/20 with corrective lenses; however, my vision is significantly distorted in both eyes (tons of wavy lines on amsler grid) and I have a large atrophied area of my retina that has resulted in a blind spot in my left eye. I sort of see double when trying to read road signs that are farther away. All of these issues have developed in the last two years, so I am very anxious about what the next 2-5 years will bring for my vision and when I will lose the ability to drive, read, etc.
liquidDinner 8 points 3y ago
I was about the same age when a doctor told me I appeared to have age-related macular degeneration. He knew he was wrong because of the whole "age-related" bit and sent me to a specialist.
3 specialists later, the strongest conclusion I've reached is what they're calling atypical XLRS, or X linked Retinoschisis. It's atypical because it was noticed later than my teens and doesn't appear to be slowing down like it should. In my mid 20's I was alright with glasses. In my early 30's I've lost driving privileges and it keeps getting worse.
Not sure if you and your doctors have talked about it, but try throwing out the term "Retinoschisis" and see if that goes anywhere. Your symptoms sound a lot like what I'm dealing with.
As far as how to manage it, I don't think any one person can give you that answer for you, but I'm happy to tell you what's worked for me.
Support is important. My wife's great. She knows I can't drive and tries to make sure she's home in time from work to take care of getting the kids where they need to go. We recently moved to a city with robust public transportation so I can still have some independence in terms of getting where I need to go.
Don't be afraid to ask for help. You know how people always seem to have this discussion about whether or not it's appropriate to help people with disabilities? People want to help, so inviting them to is probably a relief to them. If I'm alone at the airport I'll ask someone looking at the boards to help me find information and I have never sensed any annoyance from them.
Try not to get frustrated that people aren't always sympathetic to your issue too, though. Visual impairment is often an invisible condition. I once had a professor reply with "Your eyes look fine to me" after I explained why my condition makes some things difficult. I kinda blame TV for always making blind people 100% unable to see and making their eyes totally white for that one, though. But remember that these people have always had their sight and that it's very easy to take something like that for granted. Sure, some people are assholes, but most people just aren't around this kind of stuff so it's not something they spend a lot of time thinking about.
The hardest part has been internal stuff. Every time I have to admit I have to give something up is really hard on me. I started using a screen reader a bit ago and that was more emotional than I expected it to be. I avoid going out at night. I have to be really careful on stairs. I make mistakes because I misread things. A puzzle in a game might take longer than it should because I didn't see the hint. I'm really bad at cleaning dishes. These kinds of things add up and I start to feel like I'm a burden to my family and I'm making my wife cover for me too much. It's not the case, I *know* it's not, but it's a hard feeling to shake and it weighs on me. The mental part has proven to be the biggest challenge so far. I can learn to use the screen reader, I just hate that I have to use it, you know? It's something I'm still working on.
3 specialists later, the strongest conclusion I've reached is what they're calling atypical XLRS, or X linked Retinoschisis. It's atypical because it was noticed later than my teens and doesn't appear to be slowing down like it should. In my mid 20's I was alright with glasses. In my early 30's I've lost driving privileges and it keeps getting worse.
Not sure if you and your doctors have talked about it, but try throwing out the term "Retinoschisis" and see if that goes anywhere. Your symptoms sound a lot like what I'm dealing with.
As far as how to manage it, I don't think any one person can give you that answer for you, but I'm happy to tell you what's worked for me.
Support is important. My wife's great. She knows I can't drive and tries to make sure she's home in time from work to take care of getting the kids where they need to go. We recently moved to a city with robust public transportation so I can still have some independence in terms of getting where I need to go.
Don't be afraid to ask for help. You know how people always seem to have this discussion about whether or not it's appropriate to help people with disabilities? People want to help, so inviting them to is probably a relief to them. If I'm alone at the airport I'll ask someone looking at the boards to help me find information and I have never sensed any annoyance from them.
Try not to get frustrated that people aren't always sympathetic to your issue too, though. Visual impairment is often an invisible condition. I once had a professor reply with "Your eyes look fine to me" after I explained why my condition makes some things difficult. I kinda blame TV for always making blind people 100% unable to see and making their eyes totally white for that one, though. But remember that these people have always had their sight and that it's very easy to take something like that for granted. Sure, some people are assholes, but most people just aren't around this kind of stuff so it's not something they spend a lot of time thinking about.
The hardest part has been internal stuff. Every time I have to admit I have to give something up is really hard on me. I started using a screen reader a bit ago and that was more emotional than I expected it to be. I avoid going out at night. I have to be really careful on stairs. I make mistakes because I misread things. A puzzle in a game might take longer than it should because I didn't see the hint. I'm really bad at cleaning dishes. These kinds of things add up and I start to feel like I'm a burden to my family and I'm making my wife cover for me too much. It's not the case, I *know* it's not, but it's a hard feeling to shake and it weighs on me. The mental part has proven to be the biggest challenge so far. I can learn to use the screen reader, I just hate that I have to use it, you know? It's something I'm still working on.
gunther_icebird [OP] 1 points 3y ago
Thanks so much for your really thoughtful response!
I was told basically the same thing, that I had what looked like the age related macular degeneration of a 73 year old, instead of a 23 year old... a young ophthalmologist was the one who broke the news to me and told me it was "the most interesting thing she had ever seen", which didn't really make me feel fantastic at the time.
I will mention retinoschisis next time I go in to the retinal specialist. I think one of the most frustrating things right now is having no idea what to expect, though I realize my frustrations will shift as my vision worsens.
I feel like I am dwelling a lot on the internal/mental stuff too, and fear of what the future will hold. It is good to hear that I am not alone with that. My wife has been very supportive so far, but I know that I will lean on her a lot more as we have kids and I lose the ability to drive. I love to read, and I know I'll miss that a lot too... I try not to fixate on the things I won't be able to do anymore, but it's hard not to.
I was told basically the same thing, that I had what looked like the age related macular degeneration of a 73 year old, instead of a 23 year old... a young ophthalmologist was the one who broke the news to me and told me it was "the most interesting thing she had ever seen", which didn't really make me feel fantastic at the time.
I will mention retinoschisis next time I go in to the retinal specialist. I think one of the most frustrating things right now is having no idea what to expect, though I realize my frustrations will shift as my vision worsens.
I feel like I am dwelling a lot on the internal/mental stuff too, and fear of what the future will hold. It is good to hear that I am not alone with that. My wife has been very supportive so far, but I know that I will lean on her a lot more as we have kids and I lose the ability to drive. I love to read, and I know I'll miss that a lot too... I try not to fixate on the things I won't be able to do anymore, but it's hard not to.
liquidDinner 3 points 3y ago
Do what you can in the moment, that's for sure. I remember my own "This is going to suck" phase that happened well before things really started to get bad. Looking back it feels like wasted time.
As it got worse I started putting together a visual bucket list. Bands I wanted to see or places I wanted to visit while I can still get a lot out of it.
Something else that's helped is to appreciate that I have at least had a significant amount of time with pretty decent vision. I met a guy who went blind as a toddler, he doesn't remember much. I'm thankful at least for what I did have, and that the loss is slow enough that I have time to adapt slowly to the changes that need to be made. Nobody really chooses this, but all things considered we have a fair bit of control over our futures when compared to other people and their impairments. :)
As it got worse I started putting together a visual bucket list. Bands I wanted to see or places I wanted to visit while I can still get a lot out of it.
Something else that's helped is to appreciate that I have at least had a significant amount of time with pretty decent vision. I met a guy who went blind as a toddler, he doesn't remember much. I'm thankful at least for what I did have, and that the loss is slow enough that I have time to adapt slowly to the changes that need to be made. Nobody really chooses this, but all things considered we have a fair bit of control over our futures when compared to other people and their impairments. :)
gunther_icebird [OP] 1 points 3y ago
Thanks - I feel like you have a really great perspective on all this. I will keep your advice in mind as I move forward :)
spunkybabyminx 3 points 3y ago
My husband has RP (Retinitis pigmentosa) I'm sure it's not the same but it sounds a lot lile what he has. He got diagnosed at 10 and he is now 40. He still has some vision but also worries he is a burden. I suggest counseling for sure. Maybe even family a support group so they can maybe help understand more. There are a lot of you guys out there its just hard to find each other. Depending on the state they will give you training and someone to help with cane training which I suggest you start. The sooner the better. My husband waited to long and it's a big adjustment.
It is scary. Don't stop learning and always, always ask for help.
It is scary. Don't stop learning and always, always ask for help.
razzretina 3 points 3y ago
Whatever you can do now to prepare for what you know is coming will serve you well in the future and do a lot to ease some of your fears. It's going to be frustrating at times and there is a grieving process that goes off and on the whole time your vision is changing but it's all livable. Remember that you're allowed to feel bad about this but don't give up on yourself. If you can start learning braille now it might be a good idea, same with using screen readers. Get familiar with them while you can see it and it won't be as much work down the road. Best of luck!
Blind_Not_Clumsy 2 points 3y ago
I have a vision impairment myself.
My advice is to go to a teaching hospital and find an ophthalmologist. I am so thankful for mine.
My advice is to go to a teaching hospital and find an ophthalmologist. I am so thankful for mine.
gunther_icebird [OP] 2 points 3y ago
I am very fortunate to have two large teaching hospitals near where I live. I have visited retinal specialists at both of them and unfortunately, neither of them have been all that helpful. Besides taking images of my retina and testing FOV, they haven't really provided a whole lot of valuable guidance or insight. I was recently told that they were at a complete dead-end for diagnostic testing and my best option was to just wait until better genetic tests are developed in 5-10 years at the earliest.
8i8oio 2 points 3y ago
Wait, this isn’t Myopic Degeneration? Instead of age related macular degeneration, it’s caused by being extremely near-sighted. Very very oval shaped eye.
This is what I have. And I’ve never met anyone else with the diagnosis.
I was diagnosed at age 27.
I was too tired to read your entire post today, so I apologize for not answering each question. But I’m happy to tell you all I’ve learned about the diagnosis, new life skills, and how long it took my eyes to deteriorate. Please DM me at your convenience. Hugs!
This is what I have. And I’ve never met anyone else with the diagnosis.
I was diagnosed at age 27.
I was too tired to read your entire post today, so I apologize for not answering each question. But I’m happy to tell you all I’ve learned about the diagnosis, new life skills, and how long it took my eyes to deteriorate. Please DM me at your convenience. Hugs!
ArgumentIcy2538 1 points 1y ago
I feel you man. I'm 21 and my one dream was to be a pilot. Said goodbye to that the hard way
Otherwise_Computer79 1 points 1y ago
Where ur glasses for distance
Kng_of_the_lay_Reps 1 points 3y ago
I suffer from RP, I was born with it. You lose vision gradually from birth, suffer from night blindness, lose peripheral vision, colour blindness, colour blending and light becomes a problem because you cannot see things. Be aware, if you have my condition, it is hereditary.
Blind_Not_Clumsy 1 points 3y ago
Yikes! That is scary.
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