Stargardt Disease / Macular Degeneration - How I See - The Blind Life
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- เผยแพร่เมื่อ 3 ต.ค. 2024
- I was diagnosed at age 11 with Stargardts 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?"
In this video, I talk about how inaccurate those photos of Macular Degeneration really are. How we don't actually see a large black spot in our central vision. I even show samples of how I see!
Previous "How can I See" video:
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It's where we discuss the good, the bad, and the often annoying aspects of living with low vision. Here you can find videos about assistive technology, helpful tips and tricks, and the dos and don'ts of low vision etiquette. All shared with a positive attitude and lots of laughs. So consider hitting that SUBSCRIBE button and joining the team!
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This is the first time I've seen somebody accurately depict what my vision is like. Thank you for making this!
That’s great, no problem at all!
Yes I know how it is. Macular getting worse. My family do not understand
@@theblindlifei
@@theblindlife
N. I
I do have the ba same stargardt and still living with it for 45 yeats
My mom has Stargardt's! I've *never* seen anyone else with this eye disease, so I'm so happy to see you giving more exposure to what this is
Your description to needing light to see yet being photonic to is spot on. Others think I’m nuts.
I have wet macular degeneration and you are the first person who has shown what my vision looks like. Everyone said it will be a black spot in the middle of my sight, and so I kept thinking that I wasn’t progressing in the disease. Now that I see your example of what you may see, I now SEE why I’ve had such a bad time seeing things thinking it was “just” a floater moving around in my eye. It’s NOT, it is that blurry non-circular thing that keeps making me try to blink it away. It makes sense for the first time in 15 years.
I also have Glaucoma in both eyes that is becoming less and less controllable as the 15 yr mark comes up too. I’ve had tubes placed to drain fluid to lower pressure, I’ve had 4 laser treatments in each eye, and I use 3 different drops 3 times, 2 times and 1time a day. I have many blind spots from the glaucoma in the lower area of my vision. My poor cat gets his tail stepped on due to not seeing that area anywhere around me.
The AMD was diagnosed two weeks after I had cataracts removed. I finally saw things bright and beautiful for the first time in 5 yrs, and then almost overnight I noticed a frame on the wall in my livingroom seemed to have a wavy border around the inner mat. I remember thinking to myself “I don’t remember that being hand painted” as if someone had a shaky hand. Within 2-3 days everything that had a straight edge on it looked wavy and was getting worse so that it now looked like I was seeing a heat mirage on the street. And if I tried to read street signs, the letters were as if one letter was higher than the next letter as if someone was printing each letter on one line above, then one line below and back and forth. It was disconcerting to say the least. But I thought for sure it had to do with the cataract operation... maybe something had come loose?
I got in the next day with my eye dr. and was diagnosed immediately with wet AMD in my right eye and dry AMD in my left eye, and glaucoma in both eyes. I was started on drops once a day for the Glaucoma. And the very day I was diagnosed with the wet AMD, I got my first injection into my right eye. No messing around with this disease.
No warning. No slow loss of sight. I was just told with a sadness in the drs voice, that I unfortunately had a double whammy. Both eye diseases were incurable and progressive and I had maybe 3-4 years of sight left. I was 53 yrs old. I am now 69 and have never been able to stretch the injections past 28 days. I was able to work until I was 57, and drive until I was 64 because my left eye remained with Dry AMD. It helped the right eye until it turned into Wet AMD about a yr ago. Now both eyes have active diseases. I get an injection in my left eye every 6 wks and in my right eye, still every 28 days. I feel as though I live at the dr office now.
Sorry I went on so long, but I can’t thank you enough for showing me an actual view of what I AM SEEING. No black circle. I move my laptop around at different angles to be able to look around that blurred area, but with the glaucoma taking my peripheral vision, it is getting harder and harder to see. My family doesn’t understand how I can’t see a 55” TV. That’s what they think of as blind. Now I can show them a real representation of what I do see. Thank you. I subscribed. 😎
You tell a good review of your journey.
I pray all good things come your way
Finally someone who knows what I am dealing with.
I am so glad I found this video!! I am a Low Vision Dr and I always struggle to explain to my patients who have early disease what they may start to experience. Thank you so much for sharing this.
As someone who’s macular degeneration has finally ‘caught up with them’ this video was invaluable in allowing my family and friends to understand how the world now looks to me. I have subscribed to the channel and am looking at all of the aids reviewed by you. Great work Sam!
My faculty advisor has Stargardt's and I really wanted to get an understanding of how she sees things. This video makes everything make a lot more sense to me, and now I know why simply zooming in on the page did not help her see the page any more clearly. Thank you for making this video!
Diagnosed with Stargardt's over 35 years ago when I was in my mid 30's. They said I was lucky because it usually starts when we are juveniles. over the years I have adapted well. had to quitt driving after about 10 years and that was hard. I felt like I lost a lot of independence. Then I found how helpful others could be and I had to suck it up and start using aids. Luckily I, I found you on TH-cam and watched you demonstrate so many of these aids. My favorite is my Orcam and just recently, I watched your video on the Omni Sense roller for blind canes. It was then that I realized I had to go to the next step to let others know about my blindness. I even purchased some of your T-shirts to make others aware. They are quite the conversation starters. Thank you for all you do for all of us and I really enjoyed this video because you nailed it as far as a Stargardt patient sees. You are right no one understands what we can see and not see. Keep up the good videos. I look forward to the next one. Are you planning a video on smart canes such as We Walk?
I was just diagnosed at 46 and looking for others who were diagnosed during the in between ages so thank you for sharing your story. Right now the hardest part is the not knowing how quickly it will progress AND having already had eyesight issues basically from birth to begin with. This video was very helpful too as I had only ever seen the black spot theory up to this point but now I am left to wonder once that central vision is gone how well will the rest of my vision that is already not good be able to compensate? All I can do is take one day at a time!
My friend with Stargarts Disease has taken up carriage driving with her horses. As her driving coach this video really has helped me understand how she sees. She is a very resilient person with such a positive attitude. Drive On!
Very cool!
Thank you for making this video!!!! I have spent 14 years trying to figure out how to put it all into words and people would just look at me like a deer in headlights and confused lol. This video has hit the nail on the head. Appreciate you bro!
Yes! It's exactly what I try to tell people. Even though I have central vision that can see detail(thankfully), my side vision is exactly that! I can set something on counter and then can't find it because I only have very central vision. Thank you for expressing it so well.
Exactly Sam. That is exactly what I see as well. Over time the "blind spot" or scar tissue from the laser surgery has spread as well as suffering color blindness. Much of the blue receptors have been damaged. Thanks for sharing.
It’s funny because I have difficulty reading but I am a fine artist and paint detail 🤷🏽♀️ I have been diagnosed for over 10 years now, and realized Stargardt patients all have different degrees of the disease. It is definitely true that the brain will compensate. It almost gives you the impression your vision is getting better, but you have just learned to see differently.
Thank you so much for sharing your life and vision situation with us. I have AMD, am 86 years old and still very active in my rural and agricultural life. However, sometimes when looking for my sheep or cattle there is noting there. I did not understand why I just saw nothing but the background until you described the issue. Thank you so much. I have spent hours trying to find something that can help me with both my indoor -haven't seen myself clearly in a mirror for over a year - vision and my outdoor -finding objects at a distance - vision, plus regulating the effects of too much or too little light. So far I have found nothing that helps either situation. I will continue to watch your product reviews in hope of finding something that can help me. Thank you!!
Wow. You were able to describe Stargardts (my vision) so accurately!!! Thank you. 💛
Jordan
Thank goodness there is someone who really understand. I found your by chance and I have subscribed,
I am 46 and just got diagnosed with stargardt’s disease which from what I’m gathering is much more rare. This video helps me a LOT to understand what I am moving towards. THANK YOU!! I would love to connect with others who have had a diagnosis between the ages of 30-50
Hello my friend my name is John. I’ve had Stargard since 2000. Maybe sooner. I am now 54. Just to give you some advice. Having family/friends has really helped me in my life. There’s nothing like support. Right now I’m using a Magnifier to see this and, the speaker on my phone because it’s way too exhausting to be typing all of this. I’m a very blessed man at my job. Are people who know people. I’ve been to UCLA Jelin Institute. I’ve been to the university of Illinois in Chicago. And I’ve also had two visits to the Mayo clinic up in Rochester Minnesota.there is no cure yet but they are working on it. God bless you, my friend. Take care and stay safe.
Type 1 diabetic here with pretty bad vision loss due to the diabetes and a botched surgical procedure. I just found this channel and listening to this video I relate to a lot of these problems. I haven't lived with poor vision for very long and any channel I find that can help me is great. Thank you.
Yours and mine's Stargardt are very alike! Especially the part where you described the blind spot in the center of the vision. I was diagnosed with Stargardt disease just a few days ago. Very sad when hearing that from the doctors. But mine is ring-shaped macula. So it is not yet affecting the very center of the vision, but the ring-shaped macula is there, surrounding the central focus point. I really had a hard time explaining what I see to my friends and familiy. It is not black spot. It is actually exactly what you said or demonstrated in the video.
Thank you very much for sharing this video! Cheers mate!
Thank you! I had someone ask me the same thing. "Surely you see a big black blob in the centre of your vision". When I said no, I see nothing they were so confused. I am going to show people who ask me your video now because your description is SO accurate. Again thank you!
Just found your channel! You nailed it. I was diagnosed with Stargardts at 19. 26 years later here we are… looking forward to following you.
I also have Stargardts, and am so happy to find your channel.
I am so happy I found your channel. I have PXE which is described in the eyes like macular degeneration. I have been trying to explain this for years. About a year ago I had a major change and am working on adapting. The depression got me for a bit but I am back up on that horse. Thank you so very much. I will continue to watch and try and watch all the past video's as I have a lot to learn.
Have a blessed day!
What a great explanation! Have had Stargardt's for 35 years and it has always been the most difficult thig to explain.
I love the “How I see” video! I have retinitis pigmentosa which is the opposite of you( I just have a bit of central vision left) but this is all so very true! I don’t see a tunnel! And when I look down the street my brain fills in the road and I can miss an entire car- it is just crazy and so difficult to explain. Great job! (Also, you have some awesome peripheral vision. Wow, jaw dropping for me.)
Thank you for sharing that! I don’t believe I’ve ever heard anyone describe how they see with RP. Good to know
I don't have Stargardts or RP, but I do have limited vision. My husband keeps telling people that's my vision is like looking down a paper towel tube and I keep saying No, it's not. My brain fills in the parts my eye doesn't see.
Your description is spot on! Pun intended! I'm so glad I found your channel. I have had quite the journey this year. I am coming to terms with my vision loss.
You are amazing! Thank you for the your generosity. I have AMD with no vision loss that is impacting my life - yet. Understanding the disease and planning for what maybe ahead is of paramount importance. I’ll be following you on your journey to help me with mine. Take care.
I recently joined a Facebook group in my area for the visually impaired/blind community. Since I consider you my Mentor. I have started sharing your videos (such as this one) to the group. Hopefully this will also expand your fan base. 😎
Thanks Sam, I use this video all the time to explain to people about my stargardts, I will even use it in a job interview when I explain my eyesight , you make it look cool!
I’m really glad it’s been helpful for you
My Mom sent me this and the description is so helpful to understand! Thank you.
The BEST description I have EVER heard about my blind spot. I have tried to explain it so many times to no avail. Thank you for this video!! I will share it with my friends!!
Glad it’s helpful!
@@theblindlife , the interesting thing is I have Congenital Cataracts and and my Nystagmus makes me see similarly peripherally. It's not like things are blurry or anything. It's just the detail is obscured by the micro shaking of my eyes. It's clear, but then it's not, It's funny cause I have this weird kind of peripheral vision where it's like I can kinda make out something, but it's almost like a ghost image. It's there but it's not. Again, it has to do with those micro movements. I think the way I see is actually more complicated than anyone can understand.
I am 42 I have had Stargarst's since I was 9, That is the best example of how I see. Good job.
Thank you sir!
This is great! Thank you for making a video with such an accurate explanation. I’ve been living with Stargardts for 30 years as well and it’s so difficult to explain to people. Even family members struggle to “believe” I can’t see because over the years I’ve learned to manipulate what vision I do have so well. It’s frustrating. I look forward to sharing this and watching your other videos. I Subscribed!
Awesome, glad you found the video helpful!
Can you still read a book after 30 years? I am 22 and recently I learned I have this disease. I am a medical student now and it scares me a lot that thoughts about there is a possibility to cannot read anything more after a while.
Just found your channel as a half blind person only 50 percent vision in my right eye & zero vision in my left eye but that's another story thumbs up Hi from Sydney Australia.
Thank you so much for posting this! I don't know how you managed to get the camera to replicate it, but this is really accurate! I am beyond impressed. Thanks to you, I am able to show my family what my vision is like so that they are better to able to understand why certain things are really difficult. I am so grateful for your videos 🙂 You are helping me and my family understand that I am not as limited by this as I thought.
Ah! FINALLY! Not too many people ask me how I see anymore but this is what I will say or show next time. Well done!!
Thank you. Diagnosed at 48. This is the best simulation I've seen❣💫
My daughter's boyfriend has this. He's had it since he was about 12 I believe it was. He's very upbeat. He loves to make blind jokes and loves it when you make some too. One of the best people you ever want to meet. Totally lovable
This is the video I've been waiting for. This is heretofore the most accurate representation of vision with Stargardt's I've encountered. Thank you Sam.
Omgosh! Thank you! Most accurate description!
Thank you so much for making this video. I have wet macular degeneration and saw a video about what it looks like fro someone to have macular degeneration. It felt claustrophobic to see this dark spot growing bigger and bigger in what would be that person's central vision (which was really a camera). It was a perfectly round black spot and my central vision while not completely gone, has empty spots and I see curves where there should be straight lines. I see my days of driving will end before I want them to. I love your upbeat personality and how you threw in some humor. I needed that. I have subscribed to your channel.
My son just sent this to me and told me this is exactly his experience. Thank you so much for helping me understand his situation. 👏🏼👏🏼👏🏼
My pleasure, I’m so glad it was able to help!
What sighted people can't get is how complex vision is and that it is a mental process andnot simply a physical one. You touched on something I have found which is how exhausting trying to function in a vision based world is and how scary this makes degenerative sisorders
I cannot thank you enough. I've asked my son time and time again how he sees and he did his best to explain but still couldn't quite. This makes so much sense. Thank you.
You’re very welcome! It’s definitely a hard thing to try to explain to someone, So I’m glad the video was helpful!
THANK YOU SAM!! Now I can share this with my family so they will know what I’m talking about when I tell them I can’t see things. I have macular degeneration but I still have quite a lot of my sight.giving up my drivers license was really hard.
I’m glad the video is helpful! For a lot of people, especially ones that have driven for a long time, giving up the license is probably the hardest thing they go through with regards to their vision journey.
I feel for you on the driving. I recently gave up my drivers license due to increased blind spots. I was counting on public transit, then COVID-19 hit. Thank goodness for grocery delivery, online shopping, and Uber/Lyft, plus kind neighbors. But I miss the days when I could just get in the car and not depend on others.
Judi Lewis I also had to give up my drivers license and it is hard to accept. I’m glad I can use Uber or Lyft and don’t have to bother others all the time but it does get pricey. But they come faster than a cab.
Yes, giving up driving is far more debilitating that some expect. Things change most the, eh?
Spot on! (OK, bad pun intended) Seriously, this was outstanding and does a superb job of explaining how things appear to me. I've been dealing with Fundus Flavi Maculatus for 30 years, and I'll refer friends & family to this video so they can get an idea of how things appear to me.
This is the best description of the way I see ever, I don’t have starguardts I have damage to my retina on both eyes and this is exactly how I see
What a great description, thank you! My son has lost his central sight and has also now lost pockets of peripheral. He needs a cane all the time - in all lighting. Excellent video. I’m definitely going to share this.
Thank you!
This is the best way I’ve seen not seeing described. I don’t have stargardts but this is the best day I’ve seen not seeing described. I will have to remember this. For instance I don’t see blur like ppl like to say is my vision, I just don’t see. My brain fills in and it’s just a blob. I’ve been trying to do a video of how I see. This was brilliant.
Yes!!! This is how I see with my Stargardts! Love this
Great!
Oh, good grief. I just found you. I was looking at the ad for those glasses. I subscribed and went looking for your videos. This is the first one I am watching. You did exactly what I could never describe. So, I just always told people, "You see but you don't see." That was the best I could do. You have hit the nail on the head. I was diagnosed with M.D. a little over 40 yrs of age. I am now 71. I enjoyed vision without having to wear eyeglasses until right before I was diagnosed with MD. I loved to read, was a speed reader, an artist, and a hairstylist. Losing the ability to read as I used to is very frustrating. It has progressed as I got older. Yes, my central vision is affected. I had my left eye go from dry to wet and endured laser surgery on that eye to stop the bleeding. But everything you said hit home with me. I drug my husband out of bed so he could see this. Thank you, thank you so much.
My Husband has Stargardts, he was afflicted in his early 40's and he is now 65. He went through all the experimental treatments before going on disability. I am blind in one eye from birth defect so never had 2 sight. My struggles are with depth perception mostly. On a lighter side of this disease we joke that between us we get by because we have half of a good eye 😅. Thank you for this video, my husband has shared it to Facebook so his family members can have an idea of how he sees. ❤
Awesome story! That must be a really good bonding experience for you both. Thanks for sharing!
@@j-manmarkus7591 you are welcome! It’s been wonderful to find you and watch your videos. Thank you for what you do
This was amazing. I go to the doctor next week for them to tell me this same information. I’ve been living with this my entire life but had no idea what was going on. I now have a video to share with the people close to me. Thanks!
Thank you. This helps me understand my mother’s MD better.
Just listened to you on Foundation Fighting Blindness webinar. Thank you for sharing this information. Definitely describes my vision problems which I am trying to explain to friends and family who don’t understand. I will be sharing this video with them. God Bless You Sam
Ive experienced this with ocular migraines prior. I know exactly how it is to be able to see enough to get around but have a hard time being able to read. Love that analogy and the still photos capture the phenomenon accurately. Just my “blindness” is only temporary and passes. Great video!
Thank you!
Of course I don’t know that my temporary symptoms are anything the same, but from how its described and depicted I have experienced something similar with an ocular migraine where I couldn’t read anything at all and looked almost identical the photos in his example. I cant imagine how difficult it may be living visually impaired. I didn’t mean to come off the wrong way!!!
Sir you are amazing to me, I really should have seen this video before I asked you about my friend that has Stargartz (like you) and the Apple Vision Pro. I’m excited to take him to check out the Vision Pro. I can’t thank you enough honestly we both learned so much this evening from you, you have two new fans here in Texas. My friend Jeff currently used the orcam and that alone has changed his life. Like you he is an amazing person. I have so much respect and admiration for you both. David in Texas 🇨🇱
Absolutely fantastic explaining how you see and the fact that you don’t have this big black spot here I can I can relate to that I find it difficult to manoeuvre my way round the kitchen I’ve been diagnosed with a I have wet macular And was having injections but now the injection is no longer work. I’m 74 now so most of my life I’ve been able to see and drive and do everything but now it’s difficult because I’m getting older and less firm so I’m trying to learn how to use a ninja foodie and my daughter is trying to help me but it’s a bit difficult thanks for listening
This is Extremely Helpful. Thank you for taking the time and effort to help others understand your experience.
Your depiction is very close to what I see. My blind spot is larger and my peripheral is fuzzier but very close. Great work and t
Thank you!
I basically have the same exact vision problem as you and just wanted to tell you that you did such a great job of explaining what we see. I love the way you made the coffee cup disappear. That was spot-on. Well done my friend!!
Thanks man!
You are so positive about your vision. Is very cool.
This is absolutely the best representation of how I see! I was watching it on TH-cam with Iris Vision, alone in my room, and I started shouting, "yes, yes!" when I saw the representation! Thanks, Sam, now my family can finally see how I see. They still don't get it, but it's easier to understand now. I have myopic MD and atrophy of the RPE, meaning I have some peripheral loss as well, but you hit the nail on the head!
LOL, that’s great! I’m glad the video is helpful!
Pam Harris do you find Iris Vision works for you?? my Dad has macular degeneration and it would be amazing to find something that works. we tried iris vision but couldn't seem to get it to work for him
Amazing! That's exactly how I see! Thanks Sam! :D
Agree withthe last comment. Only difference for me is that I DO see better in low light. Thanks for the video!
Mac degen x 9 years here. You nailed it! Thank you for making me feel less alone with it.
This video is BRILLIANT thank you
I am 49 years old and had Stargardts since I was 16 and it’s always been hard to explain to ppl . So THANKYOU
Has your vision decreased significantly becuz im 21 and ive been diagnosed with stargardts i started noticing vision loss at 18 im scared I'll go full blind please respond
Thanks for making this video, very accurate, I am 46 and I’ve had Stargard since seven years old. And it is very hard to explain to people.
Glad you found it helpful!
I have Stargardt it’s amazing to hear someone else describe it. That is a pretty accurate description. The other thing I get is people are surprised when I am able to see certain things and I’m always like I don’t know I can’t explain it lol.
I’m using this Sam. It sums up my vision perfectly and I’ve never been able to do it. Always told everyone that it looks like tv static from years ago but it’s never been quite right
Great video Sam! This is very comparable to how I see with LHON. I'll have to share this one out! And, yeah, I got the "How many fingers am I holding up?" reference. Drives me crazy...
Thank uou
Thank you so much, my daughter was diagnosed at12 she is going on 15, she is running track we fought with the school nurse, hard, very frustrating, we are trying, ty again, it helps my stress level and heart, God bless
That is exactly how I see! I am going to save this video. Thank you! Perfect. I like light but not bright light. And, I get the sensation of seeing OK in the dark because I don't see the loss.
Oh my goodness you are SO helpful exactly what I’m experiencing,
Very effective way to describe it.
I have Stargardts and this is....spot on...
Thank you for making this, its helping me to explain to my family and friends as well helping me upstand what I am going through as I was just disappointed a few years ago.
Nice simulations, Sam! with my rod-cone dystrophy, I find the world looks a lot like the one your video portrays.
This is the first video that I've seen about mac degen that describes what I see.
Thank you, This is how and what I see!
OMG so true! I have Stargardts as well and this is perfect. Thank you!
Great job! You got it spot on. Exactly how I live day to day.
Agree with most of what you said, especially your brain filling in what otherwise would be blank spaces ( and getting creative in other ways). Now you need to do a third version without all the editorial comments and parenthetical interjections and recognize that informing people is best accomplished without putting them to sleep in the process. People generally have very limited attention spans.😅
Yoh nailed ! I lost my central vision at age 9. Always had a hard time explaining the people how I see. The ads showing that big gray Mass used to just make me so upset . I always want to do a drawing of a picture showing what others see and what I see by pulling paint covers colors for the surrounding area into the blank spot
Glad it was helpful!
I have NAION in both eyes. It happened to me in two separate incidences in 2018. I have been watching you ever since I wanted to figure out how to mow my yard with vision loss. I’ve been enjoying your videos ever since. This one was immensely helpful for me as I also have trouble describing to someone what I see and don’t see. Thank you so much for this video!
It’s my pleasure!
My daughter has Stargardts and we love the videos you make. God bless you. Hoping for a cure one day soon!
Hi Sam. My name is Jim and I’ve been an O and M in San Diego for 16 years. I became an O and M after loosing some of my vision due to retinal detachments. I can’t over express how impressed with and appreciative for your channel. I’m sharing it with all my students, their families, and my colleagues. I learn something new every time I watch your content. Thanks again! - Jim
That’s fantastic, thank you Jim!
😊😊
Hey buddy, that’s amazing, I’m new on the journey & really embarrassed to use a cane, this clip is best thing I’ve watched & I will be forwarding to my family. It’s not en easy journey for sure.
No, definitely not an easy journey. I have several videos on using the cane if you’re interested. In short, it’s something I recommend. It’s a difficult decision for sure, but, in my opinion, the benefits definitely outweigh the negatives.
You are right. Same thing I have. My right vision seems disappear in the center. Thank you.
Hey! I met you at CSUN, I followed up with a subscribe!
I have a lazy eye, and it is so true how your brain does magic tricks. I don't have great depth perception because of my lazy eye, but it's not like I live in a 2D world, my brain fills in the gaps and I figure out depth on most things. I can really strain my eyes to perceive 3D for a short bit, but like you said it can hurt my eyes. Awesome video, thanks for sharing!
This exact blind spot thing happened to me the other day when I had a migraine. It was only temporary tho. However, I also have macular dystrophy but my symptoms are still mild. I guess the migraine was to give some insight into what my future will be like. 😝
Thanks for explaining this so well!
I also have Stargardt disease for the past 20 years but I am glad that it’s not that bad my central vision is still in tact to the extent that I can see everything but I have difficulty reading, using my phone, using laptop, and yes I am photophobic that.
Hi Sam
Its now 2023 and my wife and I have just come across your channel for the first time. Love it. What fabulous work you do.
Watching your explanation of Stargardt Disease thought we'd let you know that Leber's Hereditary Optical Neuropathy (LHON) displays what to us seems identical characteristics. My wife manifest the condition for the first time in 2017 in her mid 70s.
Hard to adapt to when you've been a sighted person all your life.
Anyway, so glad we've come across your channel and we look forward to more of your fabulous work.
MnM ( Australia)
Excellent video, my husband describes it as butter smeared in the centre of his vision. Thank you for sharing x
Thank you for this video! I've always wondered what the reality is vs what is told to you by wikipedia and other sources. There is not a black spot.
Thank you so much, my mother is legally blind for the past 6 years and you helped me with a lot of information, you rock, thank you for sharing all this informaion
It’s my pleasure!
Stumbled onto your page from a CCTV review you did. I like this video alot. I am legally blind as well. I have a rare form of arthritis for the eyes. It's called uvietis. Your description of your vision is very similar to mine. I do have some central vision in my left eye but not much. I have basically no vision in the right eye except a smidgen of peripheral vision. My brain does the same magic trick with the missing vision from my right eye. Great explanation man. I usually tell people it's like looking through wax paper with squinted eyes. Lol. I shared your video to my Facebook page. Loved it man. Also, I have the same photosensitivity issues so great explanation of that as well.
Awesome, glad the video was helpful! I’m also very familiar with uveitis, I actually have a good friend who has it.
Very interesting and awesome video! Your vision kind of relates to mine. My eye condition is sort of confusing, I have optic neuropathy due to glacoma. I only have about 3% vision in my right eye and while my left eye whenever I look directly at a object/face everything gets blurred out. I hate it when people always asks me what I see because it is hard to come up with the right words. Thanks for making this video!