Blind and Visually Impaired Community
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People with Star guardts (self.Blind)
submitted by r_1235
I have this Starguardt disease, basically some spots in the eyes, on the Macula, and was curious how of people on this sub-reddit share the same thing. I also have a bit of Nystagmus, which causes my eyes to shake a bit constantly.
Questions for these people I had:
1. Do you see some random things floating in your sight constantly? Even when eyes closed? For me, they are like either hundreds of bright paper peace’s, of random shapes, or, some dark half-moon like things. If I try to look at things properly, these things don’t get in way though.
2. I can read things, but need font size above 50, that too bold. Is it same for everyone else? Lines made out of pencil or pens are not visible to me. Sketch pens and markers do work in bright environments for me.
3. Are people with this problem able to do the bionic driving thing? I am not sure of my vision levels now, think it must be 20/200, but, basically, in dark environments, it’s completely black for me.
4. Are you scared of starting a family of your own? I know that Sam from Blind life is also having the same eye condition, and, he has a family of his own, don’t think his kids are blind.
5. What kind of careers are you guys in to? Anyone in Stem field? If you are a student, are you able to successfully navigate the math and science subjects, screen readers or magnifiers? How about braille?
6. Are you guys using a guide dog? Or a cane? If Cane, then are you using it to probe things or just as an ID cane?
7. I feel like putting bright lights everywhere in house and rooms, is it same for everyone? Anyone who prefers less lighting? Also, do you carry a bright light or something with you to navigate in dark? I’ve noticed that with modern smartphone cameras, I can successfully navigate roads and footpaths even during nights.
8. Many people call it Starguardts disease, but, I feel the word disease is kind of a red flag for people who might not be aware of this thing. I tend to just say Starguardts while talking or on my CV. Any experiences in this regard?
KillerLag 4 points 1y ago
Stargardt disease often decreases visual acuity. You mentioned pencils and pens not being visible, likely because of that. Felt tip markers are definitely easier to read, although I know a few of my clients can read pen if they hold it up close or use a magnifier.
Many of my clients with Stargardt have a family. It takes time to learn skills and different ways to take care of a child, but it is doable.
Many people with Stargardt are light sensitive, and prefer lower lighting. But the disease itself presents differently for different people, so brighter lights might help for you.
It can also be called Stargardt's macular dystrophy, juvenile macular degeneration or fundus flavimaculatus (but that is a very uncommon name). If you are going to post it on your CV, you probably want to make sure to spell it properly so they can look it up, and mention it is a genetic disorder and not transmissible (if that is your concern).
Many of my clients with Stargardt have a family. It takes time to learn skills and different ways to take care of a child, but it is doable.
Many people with Stargardt are light sensitive, and prefer lower lighting. But the disease itself presents differently for different people, so brighter lights might help for you.
It can also be called Stargardt's macular dystrophy, juvenile macular degeneration or fundus flavimaculatus (but that is a very uncommon name). If you are going to post it on your CV, you probably want to make sure to spell it properly so they can look it up, and mention it is a genetic disorder and not transmissible (if that is your concern).
r_1235 [OP] 1 points 1y ago
Thanks for the reply.
I am trying to keep my CV extreamly short, that's the way these career guidance people told me to have it. So, I guess I'll go with the first or the second name you mentioned. The 3rd one, I am having trouble pronouncing it myself Lol!
The concirn about having family came from the thing being genetically transmissable, concirned about passing it on to next generation. Although, have lot of time to think about that in future.
I am trying to keep my CV extreamly short, that's the way these career guidance people told me to have it. So, I guess I'll go with the first or the second name you mentioned. The 3rd one, I am having trouble pronouncing it myself Lol!
The concirn about having family came from the thing being genetically transmissable, concirned about passing it on to next generation. Although, have lot of time to think about that in future.
KillerLag 1 points 1y ago
If you are concerned about passing it on, you and your partner should get genetic counseling before having children. They can talk about the risks and options available.
math_girl_22 2 points 1y ago
My sons both have Stargardts. They definitely prefer low lighting. They only use a cane when they might need assistance in an unfamiliar situation, just to make it easier for others to know why they need help. They enjoy working in the outdoors and have had a few different jobs on farms and trail/park maintenance.
r_1235 [OP] 1 points 1y ago
I do the same, I never need the cane to probe things, just to show others. I hate to carry it though, not because I am ashamed or anything, but it's just keeping 1 of my hands constantly occupied. If a phone call comes, it's a bit of juggling to take out phone from pocket, and accept the call. The stick has also several times, slipped from my hands, because someone bumped in to it. Some people use the strap, but, I don't want the strap to twist or drag my hand, when and if the stick bumps or goes under some car or something.
And, wow! they work on farm? I have been scared of animals most of my life till now. I am always afraid of touching them, thinking I might put my hands randumly on their nose or some other weird place. Don't want my finger going in to eye or mouth of cow or chicken, or, worst.. A horse? I Guess, I need a bit more experience with these animals.
And, wow! they work on farm? I have been scared of animals most of my life till now. I am always afraid of touching them, thinking I might put my hands randumly on their nose or some other weird place. Don't want my finger going in to eye or mouth of cow or chicken, or, worst.. A horse? I Guess, I need a bit more experience with these animals.
Typhlosis747 2 points 1y ago
Hey, I also have Star guardts.
I never went to study after high school. I just didn’t have the vision and the schools don’t have the facilities.
I use a cane, but only so people know I can’t see and to help me with stairs sometimes.
I don’t have a family yet but I plan on having one at some point.
I also see strange things in the centre of my vision, they look like flashing lights, kind of like fireworks.
I never went to study after high school. I just didn’t have the vision and the schools don’t have the facilities.
I use a cane, but only so people know I can’t see and to help me with stairs sometimes.
I don’t have a family yet but I plan on having one at some point.
I also see strange things in the centre of my vision, they look like flashing lights, kind of like fireworks.
r_1235 [OP] 1 points 1y ago
Thank you for replying.
These bright spots you mentioned, are there some dark spots as well in between?
Also, if you try to look at real things, do these spots go away or they hinder your sight?
Best of luck with the family thing, hope everything works out for you.
These bright spots you mentioned, are there some dark spots as well in between?
Also, if you try to look at real things, do these spots go away or they hinder your sight?
Best of luck with the family thing, hope everything works out for you.
Typhlosis747 2 points 1y ago
It’s more like nothingness, not blackness. My brain fills in the same colour as whatever it is that I am currently looking at.
Ok-Communication2195 2 points 1y ago
I got stargardts disease as well! I don't have the time right now to respond to all of your questions but I will when I get the time!
TechnicalPragmatist 2 points 1y ago
I don’t have your eye disease or disorder but I am a blind stem student and it does work. We definitely need more to join our ranks. But it is not easy. I am the more common computer science though.
r_1235 [OP] 1 points 1y ago
Yes, I am not exactly in stem field, but, did graduation in Economics and commerce, and strugled with regression and statistical analysis because the things weren't accessible.
Wish if I knew about python at that time. Lol!
I am learning python as a hobby on the side these days. Though sometimes, the lign indentation thing makes my mood very grumpy. And, the damn CMD window, everytime I have to press ctrl m to see what's the output.
Wish if I knew about python at that time. Lol!
I am learning python as a hobby on the side these days. Though sometimes, the lign indentation thing makes my mood very grumpy. And, the damn CMD window, everytime I have to press ctrl m to see what's the output.
TechnicalPragmatist 1 points 1y ago
Yeah, the fact it is white space dependent is definitely interesting and not as good but yeah, makes sense.
But yeah, those programs are not as accessible so r or excel is usually recommended.
But yeah, those programs are not as accessible so r or excel is usually recommended.
Ok-Communication2195 1 points 1y ago
Hey how do you add that flair next your name ? I can't seem to figure out out
TechnicalPragmatist 2 points 1y ago
It’s in the sidebar, it’s the flair. On apps I don’t think you could do it in the native reddit app though you’d have to do it under more.
Ok-Communication2195 1 points 1y ago
thank you!
TechnicalPragmatist 1 points 1y ago
Not a problem.
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