Stargardt Disease / Macular Degeneration - How I See - The Blind Life
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- Опубліковано 15 тра 2020
- 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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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
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. 😎
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.
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!
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.
Finally someone who knows what I am dealing with.
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!
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.
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.
Wow. You were able to describe Stargardts (my vision) so accurately!!! Thank you. 💛
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.
My Mom sent me this and the description is so helpful to understand! Thank you.
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.
This is Extremely Helpful. Thank you for taking the time and effort to help others understand your experience.
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.
Sam, this video is awesome! I'm so glad I stumbled upon your channel. I was diagnosed with Ocular Melanoma recently, and while very different, also so similar! My tumor is very close to my macula and there's been a lot of talk about it. Your video helped me make a little more sense of so many things. I cannot wait to browse though all your videos, especially the accessibility info/tips! Thank you!!
I also have Stargardts, and am so happy to find your channel.
Thanks for the video.!!! I had a hard time explaining this to my mother. The examples you give here are spot on.!!! She now understands 100%
Thanks for making the updated video Sam I’ll be sure to share it with all my university friends
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!
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.
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.
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!
Thank goodness there is someone who really understand. I found your by chance and I have subscribed,
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!
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
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.
Great job Sam!! Both in communicating your thoughts and the "special" effects.
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.
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!!
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 🇨🇱
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
Sam, this video is fantastic. I also have Stargardt's. I have always struggled with trying to explaiin it to folks. I for sure will be using your video. Thank you!
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.
What a great explanation! Have had Stargardt's for 35 years and it has always been the most difficult thig to explain.
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.
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!
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!
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!
Your description to needing light to see yet being photonic to is spot on. Others think I’m nuts.
My daughter has Stargardts and we love the videos you make. God bless you. Hoping for a cure one day soon!
Thanks for this video, I will be using it to answer the same question. Well done
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. 😎
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!
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.
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
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.
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!
Thank you for educating all of us more on your disease. This was really helpful information. I know the feeling of looking back on old videos and wishing you could make another one haha!
I probably have about 200 videos I would redo! LOL
Thanks for your videos... My son has Stargardts and it's really easy for me to understand him! Take care!
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!
Thank you so much Sam for making this video. I have only recently been diagnosed with wet macular degeneration and everything I could find as a description used the black dot scenario. This explains how I see very accurately and I will share it so that my friends can understand it. I love your channel.
Thank you so much and I’m glad you enjoyed the video and found it helpful!
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!
OMG!!! You hit the nail on the head! Thank you. Im living with SG for almost 20 years now., and YES...so difficult to explain. But that was exactly right. Thanks for your videos. All the best xxx Elaine
Awesome, I’m glad you liked it! Hopefully the video will help when trying to explain to others
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
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
Thank you. Diagnosed at 48. This is the best simulation I've seen❣💫
You are so positive about your vision. Is very cool.
Omgosh! Thank you! Most accurate description!
Thank you so much. It is really an excellent explanation of what we experience with MD. I am lucky at this time to only have it bad in my left lazy eye. I also have it in my right eye which I get eyelea shots every couple months and so far it definitely takes over for my left eye. I am praying that the right eye stays strong for a long, long time. Thanks again for this video.
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
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!
just found your channel. best description of the vision loss i have heard. thank you so much.
I’m glad the video was helpful, and welcome to the channel! Also, thank you so much for being a member and the support!
@@theblindlife i met a young man years ago with stargardt but didnt realize what it really was. i am 72 and have macular degeneration due to an facial injury 4 years ago and am legally blind. i am fortunate to have had good vision with glasses since i was 15 but i cannot imagine what you have been through at such an early age. all my best to you and yours. i am learning alot from your videos and appreciate all the great information.
Thank you very much
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)
This is absolutely the best representation of how I see! I was watching it on UA-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
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!
Thank you Sam!!! This is the closest depiction to my vision of Cone Dystrophy that I have seen on the internet. And the explanation is very near spot on. The "magic trick" is real lol. Everything is a contradiction when it comes to my vision. And growing up sighted, makes it even more complicated, but a bit easier than most when it comes to knowing what's what from memory.
OMG so true! I have Stargardts as well and this is perfect. Thank you!
Sam that deserves a HUGE thumbs up my friend👍. Thank you for sharing this, it’s pretty much exactly what my sight is like even down to being photophobic. There’s also a dollop of nystagmus thrown in & because I’m also shortsighted I’ve a severe Astigmatism but now I can show my kids this video to try and explain better why Mam can’t see stuff. Thanks for all you bring us. Tori😊
Great job! You got it spot on. Exactly how I live day to day.
This is a great video
, it does explain what it's like when you have AMD. Thank you for this post.
Yes! I have multifocal choroiditis and lost both central and some peripheral with the same “blind spots”. Our brains are so amazing in their attempt to “help”. Sharing this. Thanks!
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!
Great video Sam. i have Cone Rod dystrophy. my site is alot like yours except I don't have any peripheral vision. Instead my field of view is more centred. Thanks for all your great videos you are a true inspiration.
Thank you, Sam! You helped me understand what my brother see lately.
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.
Thank you. This helps me understand my mother’s MD better.
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!
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.
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!
Nice simulations, Sam! with my rod-cone dystrophy, I find the world looks a lot like the one your video portrays.
Thanks Sam, I could not have described my low vision better. Shared
I have NAION and this is also a very good description and representation of how I see too
It's so difficult to explain to people and even though I was only diagnosed in December 2019 my brain has also adjusted and compensated for the lack of central vision
Amazing! That's exactly how I see! Thanks Sam! :D
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.
You did an awesome job explaining that. I am very glad for your videos. They are very helpful thank you
Great, thank you
Agree withthe last comment. Only difference for me is that I DO see better in low light. Thanks for the video!
Excellent video, my husband describes it as butter smeared in the centre of his vision. Thank you for sharing x
Thank you for explaining!! It helps me better understand how my son sees.
This is really nice
I loved your explanation!
I learnt something new today ! 😊
That’s great!
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!
Thank you for this video! I have Non-arteritic anterior ischemic optic neuropathy (NAION) in one eye and although a different cause, what I see is very much what you've shown here. In my case, I have central vision but a hair to the nose of central I have a large blind spot and it's always been difficult to explain what I see. I'll certainly be sharing your video!
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.
Yep! You nailed it. No black hole. Thanks for sharing.
Love the way you did this and just found your video reference computer setup. I’m a certified ICF life coach with CHARGE syndrome and momma to 3 amazing guys. I have coloboma in both eyes since birth and it’s really starting to impact my computer and phone use. What you described here I can completely relate to. I wish there was a way to create a video to show my kids how I see. This is close but not quite - I also have pixelated vision the darker it gets and sudden shifts from darkness to light causes pain as well. I can type but reading a lot of text is so hard. My lifesaver has been Alexa reading my Kindle books!
I’m working on replacing my desktop so you gave me some good ideas. I’m still a bit overwhelmed but I’ll figure it out I’m sure! Great channel!
I'm glad you found the videos helpful! I have a ton of videos on computer/smart phone accessibility so feel free to look through my playlists. I even have videos on how to set up smart phones for low-vision. Did you see my most recent video? It was featuring the new Windows magnifier reader which will read out anything you want. It's basically an on demand screen reader for the Windows magnifier. I also have videos showing off the text-to-speech options on both android and iOS. While you're on the channel, I would love for you to click the subscribe button. It helps out the channel and lets you stay up-to-date with my videos!
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!
This video is BRILLIANT thank you
Like everyone else -- I am SO happy to find your site and your work. I ADORE the T shirt that sys I can see but I can't -- its complicated!! O boy does that ever find true!! I look normal -- wear cool glasses etc... but cannot read a menu to save my life or a drink board in a cafe... so point to it and say there's the menu and I say... gee sorry but I am vision impaired ....The importance of group support for so many things in life cannot be overstated.
you are awesome. I like the way you explained, clear with the image. we love you.