Stargardt Disease / Macular Degeneration - How I See - The Blind Life

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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What is The Blind Life?
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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[JackiJinx]

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

[hrtg]

Your description to needing light to see yet being photonic to is spot on. Others think I’m nuts.

[connierifenburg]

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. 😎

[elliieebit]

This is the first time I've seen somebody accurately depict what my vision is like. Thank you for making this!

[aletheathomas]

Finally someone who knows what I am dealing with.

[carmenperez]

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.

[richardfreeman]

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!

[follyfarmstable]

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!

[Buppysmediaworld]

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.

[brenthebert]

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.

[dbrh]

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.

[nancyduley-nunn]

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!!

[jackierahali]

Thank goodness there is someone who really understand. I found your by chance and I have subscribed,

[rusantos]

Wow. You were able to describe Stargardts (my vision) so accurately!!! Thank you. 💛

[violetsarenotblue]

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!

[Joe.Rogan.]

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.

[skylerrodolph]

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.

[JohnHelmling]

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 YouTube 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?

[patriciawaechter]

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.)

[debbybrooks]

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!