Stargardt Disease / Macular Degeneration - How I See At Night - The Blind Life
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- čas přidán 12. 07. 2024
- I was diagnosed at age 11 with Stargardt’s Disease and have lived with it for over 30 years. This video is intended to answer the question I've gotten so many times, "How do you see?" Many of us with vision impairments that affect our retinas, suffer from night blindness, In this video, I talk about and show how I see with night blindness.
Here's the first video in this series:
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As diagnosed with Stargardts over 30 years ago, and I don’t think I realized that what I was seeing at night wasn’t what everyone else was seeing! This is also why I really love Christmas lights :-)
Yes!!! As someone who has RP, and has suffered Night Blindness all my life (still took until I was 16 for diagnosis!!) It’s always so hard to explain what it “looks like”, so thank you for finding a way to show this.
This is a little old so sorry, but I to have RP and almost no night vision anymore at all so being at that stage where someone asks “what is it like” is hard because i have to remember not everyone has my vision.
Few days ago I was diagnosed with Stargardt disease. 23 years old. It is very saddening for me to acknowledge that I suffer from a disease in which it can't be cured, at least at the moment. In the far future (hopefully sooner!) I hope there will be a cure for Stargardt disease. Today, I was curious about how people with Stargardt disease live their life. Then I found your video.
This is the first time I discover and watch your video. It really resembles what I see all this time. Generally, I have a hard time seing at night, dark room, low light room, or basically any location with low light.
Thank you very much for making this video. I can learn from your video and life experiences, then apply it in my life.
That was very helpful for someone who has myopic macular degeneration explained a lot to me more so than my eye doctor has
I was just diagnosed with this yesterday.
Thanks for sharing this. I have RP and didn't realize the night blindness affected all of us with retinal disorders. I think most people don't really understand when I talk about not being able to see in the dark.
I have RP too
Nicely done Sam! As someone with RP I can relate. I have a question and advice for you and everyone else with the same condition. How do you manage your night movement? I mean, few people here mentioned using a flashlight as an obvious choice, which I used to do as well. However, lately, since smart phones have better cameras and software for taking photos in the dark, I find it very useful just to turn the camera mode on and look at the screen as the picture is much brighter than what I can see with my own eyes. It's very handy as you don't really stand out on the street walking with your eyes on the phone :) Now, my question is, are there any "smart glasses" that would have just the camera and the screen in front of my eyes, for the same purpose? I've looked into it and really couldn't find any, as most of them are more complex and focused on other features. As an IT guy, I believe this could be a great night vision accessibility gadget.
That smart phone camera idea is brilliant. I just tried it and it was amazing. I will use this suggestion from now on. Brilliant! Smart glasses would be wonderful. Yes I have RP.
I have researched into the same topic however all I could find is infrared vision glasses meant for security services, military etc. I could not find anything for commercial use for people with night blindness. I am happy to connect with anyone in this topic. Maybe we csn develop a prototype together and create a new product.
My two brothers and I have rp. This video is a perfect description of our night blindness
Sam you are spot on describing night blindness. I have RP and I can't see the stars in the sky at night. The flashlight is my best friend when it comes to navigating in the dark.
One thing that always makes me the most sad about having RP, is not seeing stars (I can still see the brightest ones!). Travelling places like Nz and Fiji it always sucked not seeing the stars that literally illuminated the sky.
Great video. I have RP and videos like this are great to spread awareness of some of the difficulties we face. Keep up the great work
thank you for putting this video up I have RP it going to be so helpful.
I too have RP and MD. I love your channel and I thank you so much!
Thank you Sam great video! I have RP and always found it difficult trying to explain night blindness to people. Your explanation and visual examples are excellent thank you so much. Now I've saved your video I can refer back and share this with others to help them understand it too.
very cool.. I have SD and the bright lights at night are almost painful, sometimes I wear my sunglasses at night. As always, thanks for giving us something to share
Thank you so much for explaining night vision so clearly
Thanks Sam! I’m going to share this with my mom, so she can gain a perspective on how my eye disease has affected my vision in low light. 👍🏼👩🏽🦯
Great info ty for all u do friend ❤
Great video Sam. I remember someone asked what night blindness looks like and I feel like i failed at describing it lol. I also wanted to add that night blindness also contributes to struggling to adjust to lower levels of light after being in bright places. I always struggled with this when we had gym outdoors and had to return to the building. Depending on how bright it was outside, the building would seem darker and it would take a long time to adapt to the lower level of light, if my eyes ever truly adjusted at all afterwards.
I have the same issue. It’s definitely easier to see on overcast days
Hey Sam! Hope you're well!
Interesting topic. I used to be able to actually prefer darkness a lot, lights can be so exhausting! It also didn't impeded thee little vision I have too much. Well, that's until I also got some damage (detachments) on the retina's and in particular the macula's in the eyes. Really made it much harder to see anything with the lights off now! It's like night and day... pun probably intended, sorry.
Anyway, good info as always! Haven't seen your content in a while, awesome to see how much your channel has grown man, keep up the good work and take care!
Thanks Seb! I've been enjoying your new food contact as well! Although I don't know if I could have done the seaweed chips!
Sam, I am so glad that I found your channel a few weeks ago, finally found someone else that can relate to what I am experiencing. Thank you for all of your hard work.
Can you share how you do the camera effects that show how you see?
Great explanation. My night vision has markedly decreased since I was diagnosed with myopic macular degeneration 20 years ago. If I'm going to visit a neighbor and I know I won't be home until after dark I always take a good flashlight with me ever if the neighbor is only a couple a houses from mine. Also I have a floor lamp in the bedroom that is controlled by Amazon Alexa with is handy if I need to get up at night.
Sam, I think it's fantastic how you can record directly off your optic nerve. But seriously, it must be hard validating your "how I see it" videos. Those of us with vision problems look at your videos and say, yup, that looks like what I see. But we can't be SURE someone with "normal" vision sees the video the same way we do. It's almost as tricky as trying to tell someone what your pain feels like.
Thank you for this! Ive been trying to tell people I can't see anymore. I would've thought driving my night blindness would be worse at night, but it's actually at twilight! 😲 the trees, road, horizon, everything is the same grey color and it all blends together! I cant make the edge of ANYTHING out. I'm now heading to work at a different time just to avoid it!
I can’t wait till my first orthodontist appointment because I am medically undiagnosed due to a 6 centimeter brain tumor I suffered back in July. I’m praying that glasses will help with my vision loss, but if not then I just have to deal with it snd move on. Thank you for your service to the blind community because being blind is full spectrum.
An orthodontist can improve your smile. Not sure about your vision, though. -)
@@rmkofmd1398 oooh I meant to say Optomoligist 😂😂😂 damn word guessing on the Apple phone lol
wow!! thats informative and i also have some for of night blindness
This video is way more relatable for me., because I have partial and night blindness, posterior capsular opacification, low vision etc.
I also have had Stargardt’s for over 30 years and this these videos (2so far) are the most accurate representations of how I how I view the world I have ever…..seen. ??
I too have stargardts disease, could you answer a quick question please. In the centre of my vision i have balls of ever changing neon colours,is this the same with your vision? I will understand if you don’t want to reply due to how random this must seem.
Omg, thank you for posting this. Ive had trouble seeing at night for years now. Ive always has 20/20 vision until, 2yrs ago i had an annual vision test for work and i failed horribly. So much so the nurse at work said it must be because i was tired and it was the middle of the night (i worked 12 hr night shift). The next year time to take the test again, i tell them that ive had trouble reading road signs that i used to be able to read with no trouble. They give me the regular eye test, i fail, then she starts holding up posters and cards across the room, i cant read them and she tells me i need to go get glasses before i can work again.
I go to the eye doctor and get fitted for glasses. But im telling the Dr about how quickly im losing vision and he dismisses me and says its not possible for someone whos never had an issue with vision to go as bad as mine was within a year if they had good vision to begin with. That ive prob had bad vision my whole life and it was never caught. I gave up and just took his word for it. But now ive watched this, im going for a 2nd opinion. Ive always been able to see very very well. We used to play a road trip game where we would try to read the furthest road signs away and i always could read them from a longer distance than anyone else. And now i cant see my daughters face if shes 5 feet away from me.
/ comes with RP Too
Thank you! I have cataracts and a family history of AMD(although no signs of AMD yet). I've recently become more sensitive to bright lights and I notice I need more light to read at night. I was wondering what night blindness looks like and if I am developing it. I was told that would be the very first sign of AMD. Now I understand what it is.
When I am out at night,I have a seeing eye dog,and he does his job very well,but I still bring all my portable lights with me,makes the walk a little easier.
Greetings. I am 68 and have been recently Dx with Stargardt’s. I need new sunglasses and am wondering if you have any recommendations? I would like a pair that blocks out light from the top and sides, like mountaineering sunglasses but haven’t started looking yet. Thanks for any help and for your channel!
I had nightvision problems in the mid 80's. Hospital never found the problem.
I have Glaucoma and this is what it’s like for me too
Thanks, Sam. The video explains what I see at night. I've got Best disease, with only 5% of my central vision remaining. I've tried to make a video of what I see, but the frame on cameras is always in focus. I see with peripheral vision, and it's unfocused in any light. No auto-focus camera can reproduce it. Your other video on central vision loss, and the brain's translation of the missing part, is a great reproduction of that part of vision loss. But the outer areas are in sharp focus. Sighted people will see that and think that peripheral vision is focused like central vision. Can you make a video that corrects for that? I don't have the skills to do it. I do appreciate all of your great videos and interviews!
Actually, in that video, I did defocus some of the reference shots. You can see it in the one with the air conditioning vent.
2 items that I use to help light up dark enviroments are the flashlight on my Android phone camera. It's an LG smartphone but the flashlight on it is really good. The other item is a spotlight flashlight. It's a Rayovac spotlight flashlight, the shape of it reminds me of a hair dryer and it has 3 brightness modes low, med, high and then the fourth mode is a strobe. If I'm using the spotlight flashlight I like to keep the light on medium or high.
Yep Night blindness was the very first symptom for me when I was 8-9 years old when I would get up at night to use the bathroom even though our bathroom was close to my bedroom I would bump into the walls & would feel like I needed the hall light on even though everyone else would be asleep. Funny enough the summer of 2002 when I was 9 I went to live with my uncle my dads brother & his wife at the time. He is an optometrist and did a routine eye exam on me and took pictures of the insides of my eyes and told my dad and my ex step mom to take me to an eye center to have more testing done. After I had a whole bunch of tests & lab work done found out that I had Retinitis Pigmentosa at Emory Eye Center in Atlanta in late 2002/early 2003 so 20 years ago now. In 2019 after I had my cataract surgeries I got my genetic test results back and the gene mutation that causes my RP is called BBS Bardet-Biedl syndrome. BBS not only affects a persons vision but other parts of their body
I have also blindness at night. And Im always praying of how to cure this.
DYNAMIC RANGE is my bane😢. I can't walk at night without holding onto someone, I've twisted my ankles so many times and get made fun of for thinking there's holes, steps in the ground
I have retinopathy of prematurely
I don't have night blindness but of course in low light situations in the street it's difficult sometimes and yes bright car headlights annoy me so much
I got diagnosed with stargardt disease last year and this is 100% true. One thing that helped me is putting one small led light in every room of my house so I can navigate at night without flipping the main light on and getting blinded.
How help me.?
Im not blind (unless i take my glasses off & even then i can still see in dark just fine w/no blind/dark spots) & your channle is helping me alot w/understanding the spectum of blindness. I do have a few small but genuine question:
Can some types of blindness be impermanently elevated (i couldnt think of another word & didn’t want to say "fixed/solved") with glasses, albeit very strong ones?
Can a person with a type of blindess that still lets them see some things still need glasses? (Ex: someone with only central vison but saud vison needs glasses to be seen clearly)
And would it be unlikely for a person with low light blindess to cary a flashlight on them?
[For some context, i am a writer who wants to write characters that are diverse (Ex: neurodivergant, amputees, deaf, not white, diabetic, ext) but when it comes to certian diversities i do not have myself i reaserch them untill i have enough if an understanding to accurately and respectfully depic them. (I am doing such with Autism rn, since i do not have it) And I have more trust in a person than I do google to provide honest & accurate information.]
Yo that's exactly how I see the night shit! How do you fix it? Or am I just stuck like this?
I have night blindness to but I need a little advice. I like to sing and I want to get back on stage at church but getting on and off in the dark is super difficult. I am thinking of putting in some kind of tape or floor guides to help. Any suggestions? This is not a situation I can use a flashlight or anything like that. I need to be able to guide myself on and off stage.
I have end stage glaucoma and have night blindness also. Sucks.
I realized that I had a condition called Visual Snow Syndrome late last year, and when I realized I had that- I also realized that I had issues with being able to see in dim light. I found this video really interesting, and it's encouraged me to seek a diagnosis.
Can vitamin A deficiency be fixed and vision go back to normal?
Hi I've been looking for a 43-in monitor having a hard time I was wondering what monitor do you use and how's the print thank you
I use a 43-inch 4K Samsung monitor and it's great! amzn.to/3XqllUr
basically fault in dynamic range
I have macular degeneration from birth and I wanted to know how people cope socially? I have a hard time interacting with people because I can’t recognize facial expressions so people have always perceived me as mean or standoffish. Also, is there anything for aiding w night or low light vision?
Maxleaids and Amazon low vision
How about Computers for the Blind?
I have stargardt
👍👍
So does this mean if someone has night blindness they can’t see at all or allowed to drive at night? Doesn’t mean your completely blind, right?
Well, there could be different levels of night blindness. Anywhere rom having a little trouble seeing at night, to not being able to see anything at all. For most people with any type of night blindness if they are still allowed to drive during the day, they might have restrictions about driving at night or in bad weather.