How I See With Stargardt’s

What is is like to see with Stargardt’s

If you know me and have spent any time with me, you’ve probably noticed that my vision isn’t very good. Whether I’m holding a piece of paper or my phone up close to my face or sitting inches away from my computer monitor and still using the magnification, it is pretty obvious that I have a vision impairment.  Many people ask questions about my vision such as, “can you get stronger glasses?”, “is everything just blurry?”, “how did you get it?” and more.  So this blog post is meant to answer some of those questions and help others understand what it is like to have this vision impairment.

What is Stargardt’s? 

Stargardt Macular Distrophy, or Stargardt’s Disease, is an inherited form of macular degeneration.  The macula is the central region of your retina.  So, as the name implies, macular degeneration is the deterioration of that central area, thus causing central vision loss.  Symptoms (decreased vision) usually manifest during teenage years, but in some cases people are diagnosed even younger or much later in life.  I started losing my vision and was diagnosed around age 17.  Stargardt’s doesn’t make a person totally blind.  Vision usually deteriorates to visual acuity of somewhere between 20/200, which is legally blind, and 20/800.  The rate of vision loss varies, but can be as quick as just a few months to go from 20/20 to 20/400.


Could Stronger Glasses Help?

I wish!  The eye is like an old film camera.  The cornea of the eye is like the lens of the camera.  It is responsible for focusing on the image and letting just the right amount of light in so that the image isn’t too bright or dark.  The retina is like the film of the camera.   It captures the actual image to be processed.  So, if your lens (or cornea) is bad or defective and you can no longer focus properly, you can fix it with a new lens (glasses or contacts).  But If your film is damaged (retina), then it doesn’t matter how good of a lens you have, your image is not going to come out clearly.  Since Stargardt’s affects the retina, there’s nothing that can be done for it right now.


Is Everything Blurry? 

In general, everything is a little blurry and then there’s one big empty blind spot in the middle.  But the blind spot isn’t just a black or gray dot.  The brain tries its best to fill in the gaps with what it thinks is there.  Did you ever do the thing as a kid where you draw a line with a gap and with an X on it to find your blind spot, and see how your brain fills it in with a continuous line?  (Here’s an online version of that) It is like that but on a much larger scale.

There are some websites and mobile apps that try to simulate what it is like to see with Stargardt’s or macular degeneration in general.  But most of them show big black or gray spots for the blind spot.  Some show it more of a donut shaped blind spot, which I’ve never experienced.  So, using my limited Photoshop skills, I’ve created some images to approximate how I see the world.

Normal Stargardts

In this illustration you can see how the central vision is gone and the brain tries to fill in the gaps with what might be there.  In this case, since there is, a white wall.  You can also see that it is easy to make things disappear, like the plant.

Normal Stargardts

Here a half a person disappears, filled in with the background color, which is blue.  Pretty strange, but neat at the same time.

Normal Stargardts

Sitting in a car, it is sometimes fun to see if I can move my blind spot around to make entire cars disappear!

Normal Stargardts

Talking to people up close can still be challenging.  Trying to look directly at their face puts the blind spot directly over them, making it difficult to see facial expressions, etc.  So it is not uncommon for those of us with Stargardts to actually not look directly at you while talking to you.  Instead we look off to the side of your face so that we can (sort of) see you., which, as this next picture shows, is still kind of blurry.

So even with this strategy, if you are more than 5-7 feet from me, I couldn’t tell you if your eyes are opened or closed.


Trying to Read

Reading print is tough, especially with small font sizes.  Even if the font is larger, reading is slow as my eyes struggle to focus on each new word while also trying to look around the big blind spot.  So unfortunately, I don’t read as much as I would like to.  When possible, I prefer to read things digitally on the computer where it is easy to zoom or enlarge the text size.

One trick I do for smaller print such as cooking instructions or medicine bottle instructions is to take a picture of it with my phone and then zoom in on the picture to read it.

Some people ask me if the words just look too blurry to read.  I don’t consider it blurry, just too small to read.  For example, if you were to try to read this text from across the room, say 15-20 ft away you probably wouldn’t describe the text as blurry, just too small to read from that distance.  That’s how it is for me from just 2 feet away.



So, I actually do wear glasses.  They get my vision from 20/400 to about 20/80 or 20/100, which is borderline the limit for being able to drive.  Ohio, and many other states, offer what is called “bioptic driving” for those that are just short of the visual acuity requirement for driving.  It is basically driving with a little binocular mounted to your glasses, which you use to peak through every once in a while to read a street sign or see the color of a traffic light, etc.  You have to go through a training program and pass a test with it.  So, I do drive.  I try to only stick to roads that I’m pretty familiar with and I try not to drive at night or in the rain unless absolutely necessary.  While driving, I try to constantly be looking around in different directions in front of me to make sure my blind spots aren’t making me miss anything.  Unfortunately, most people with Stargardt’s cannot see well enough to be anywhere close to being able to drive.  I’m lucky.  I know that.


Any Treatments Available? 

Currently there is no treatment of any kind.  The retina is too fragile to perform surgeries on it without risk of tearing or otherwise damaging it.  However, technology and research have come a long way over the last decade.  There is a lot of research going on currently with things like stem cell treatments and gene therapy that are looking promising and have shown positive results in early clinical trials.  I believe there will be a treatment in the next 5-10 years.


Will my kids have it? 

Stargardt’s is hereditary, meaning it is passed down from your parents.  The only way to know for sure is with genetic testing.  Rather than testing each child, we just had my wife tested to see if she is a carrier.  She’s not.  So there’s no chance my kids will have it; but, they will be carriers as it is a recessive gene.

This question comes up a lot from those that have Stargardt’s.  To explain how it all works would require going into a little bit of a genetics lesson from high school biology, which I’ll save for another blog post later.  (UPDATE Jan 3, 2018:  I did create such a blog post – How did I get Stargardt’s? Will my kids have it?)


How Does it Affect My Life?

Overall, life is good.  I’m generally a positive person and I try not to let my vision hold me back.  I’m lucky enough to still be driving, which helps tremendously.  I love my job – working on a computer all day is ideal for me with the ability to zoom/magnify stuff.  I can still play sports like racquetball and even coach my kids Little League baseball teams.  Some of the things that are different or annoying or bother me to varying degrees are:

  • Unless I know you really well and can identify you by your shape, how you walk, or the sound of your voice, I probably can’t tell who you are until you are within about 10 feet of me.
  • Even then, if I don’t know you too well and haven’t had many close-up conversations with you that would let me see and get to know what your face looks like, I probably won’t recognize you. I hope you’ll forgive me.
  • When it comes to watching TV, I usually have to choose between snuggling up with my wife on the couch or sitting up close to the TV so that I can actually see what’s going on. That sucks.
  • Trying to spot my kids among a group of other kids, like at a playground or daycare, is impossible unless I’ve memorized what color clothes they are wearing and look for that.
  • I usually can’t read the menus at restaurants, so many times I simply ask the person waiting on me what is popular or what their favorite thing on the menu is. This usually works out great because I like pretty much anything and am always open to trying something new.
  • I coach my kids’ Little League baseball teams and have to memorize who is playing each position or the jersey numbers of the kids because other than that they pretty much all look the same to me unless I’m standing right next to them.
  • I have to use binoculars for things that most people wouldn’t, like watching my kids play a soccer game, or watching a concert or sporting event from the good seats.
  • It is tough or impossible to read a story to my kids at night unless the font is large.
  • If I’m playing a sport with a small ball, like squash, racquetball, golf, or even baseball, I will often lose sight of the ball in my blind spot, especially if the ball is moving fast. So I try not to be too competitive at that stuff since I know I’m at a disadvantage.
  • Movies with subtitles are worthless, even in a theater, unless someone sitting next to me reads them to me.
  • I love to draw. But drawing now is a struggle sometimes, especially if I’m trying to see or draw some finer details.
  • Smart watches sound cool, but I could never use one with vision this bad.
  • Speaking of watches, digital clocks are much harder to read than analog clocks.

All in all, Stargardts does have its challenges, but by keeping a positive attitude, utilizing technology, and staying optimistic about the current research going on, I feel like I live a pretty normal and happy life.






  1. Great reads, still learning new things since you were diagnosed from Dr. Andrews back in high school. Looking forward to your next installment. We always try to read and keep up with all news concerning this disease and just know that someday soon there will be a cure for you and brother Aaron!

  2. Great job on putting into words just how you are affected and cope with this disease. I continue to pray that research and development will someday soon find a solution to better vision for everyone who has been diagnosed with Stargardts. I also pray that God will let me live to see the day that you and Aaron have the ability to watch your kids play sports without the use of binaculars and can see life as it is. I am so proud of you Keith for the positive attitude that you maintain no matter how difficult it seems at times. This is a great inspiration to those who have become discouraged because of their visual impairment. You have shown them that this disease is a “visual” impairment, not a “life” impairment. I love you

  3. Hello!
    You said you work with computers… What do you do? I am asking because I had to leave my job due to this reason, I felt my vision stressed every day. Also, could you tell me about your glass, which you can drive using it? In Brazil, they say there’s no tool for it, and I would like to drive again. Thanks a lot.

  4. Great read, I really enjoyed it. I also have Stargardt’s and can identify with a lot of what you have said. I was diagnosed in 2001 (age 24) but it was fairly advanced when I found out and it probably started in my early teens. To Samantha I have used a 32 inch LCD TV screen for about 12 years at work and also on my home computer.

  5. Hi, great post and I can identify with a great deal of what you say. I was diagnosed in 1979 when very little was known about SD.
    I have never driven and although I love cars I wouldn’t want to risk driving. I love your final paragraph and your positive outlook, I am very much the same. So much so that I took the sport I love to the highest level, it really doesn’t matter whether you can see a go,f ball once it has been hit, someone else can help with that, but because it is a static ball first off it is easier to hit than a moving one! Keep smiling buddy and again, great post, thanks,

  6. Very well written. Thanks for sharing- it’s great to embrace seeing differently and I too enjoy making cars disappear when riding as a passenger!

  7. Hi Keith,

    I cannot thank you enough for putting this together. My boyfriend has Stargardts which was misdiagnosed for a very long time. He is a very positive person. On a day to day basis, I almost forget he is struggling with his sight because he is so composed about it. We watch movies on a projector so that he can enjoy them too. And I help him with the subtitles. At restaurants, he usually clicks the picture of the menus and zooms them on the phone to read if needed. But it pains me to not be able to understand what he goes through as much as I would like to. The pictures really helped me understand his situation cz I wanted to know what the world looks like to him. Thank you.

  8. I just came across this and I want to thank you so much for so eloquently explaining the condition I have had since I was 8. I’m in my forties now and Have never heard it explained so well. Learned more from your post than I ever did from any of the doctors and specialist I have been to. Thanks again

  9. Loved your blog. My daughter was diagnosed with macular dystrophy. She too has such a positive attitude. I shared your blog with family and friends at our work (she works with me) because it was perfect. I think the more educated the people around her are the better. I follow the clinical trials praying for the cure. Thanks so much for sharing your story.

  10. Great article! Very informative and helpful. I have a family member that was diagnosed. My family member is singe and has been hesitant to share her diagnosis. She’s often sad about finding true sincere love. I’m encouraged that she will meet someone who will love her beyond her vision impairment. In reference to driving, do you have any issues reading the vision chart at the DMV being that you’re borderline? Are you able to read the required line? Thanks again for the courage to share your story and help so many!

  11. Hi,

    I recently found your blog as my boyfriend has recently been diagnose with Stargardt’s. I will be honest the unknown what will happen to him and what he can and cannot do is so scary. I know that everyone is different, but reading your blog has given me some optimism and insight about what it may be like for him. I am planning to share your blog with family and friends. Thank you so much for sharing your journey. I hope you know how much this means to me and others.

  12. Hi! I was reading through the comments and almost started crying because you’re a software programmer and I was thinking about going into that field but I was recently diagnosed with Stargardt’s too. Do you just use magnification? I’m young, but it’s still hard to read. Thank you very much for this new hope!

  13. Extraordinarily well described and illustrated.
    I was diagnosed late, around 2000 when I was about 40 years old. Stopped driving good 10 years ago, because I missed out too much what was going on in traffic. Continued working as a technical translator until last year, when my vision rapidly deteriorated from 20/200 three years ago to 20/1000 (2% central vision) in both eyes.
    Still love to work on my computer with a 47″ monitor and magnification, even though everything takes extremely long.
    This year I was nominated as Acting PR officer of the Malta Society of the Blind, and I hope to be in the position to fulfill this role for some time to create more awareness for people with visual impairment, especially when a big part of the society expects “blind” persons to look different (with dark glasses, cane, dog) …

  14. Keith,
    Thank you for your helpful education for those of us on the outside looking into your world. I am a pastoral counselor and have been meeting for one year via remote access with a client who was diagnosed as a child. He recommended I read Runyan’s book which invited me into the challenges as only an insider can describe them. I welcome additional resources. While he is not my first client with disability, this is my first client with significant sight limitations and his limitations impact the quality of life in all areas.
    Dr. Dennis

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