Through the Glass Dimly: My Experience with Stargardts
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My Experience with Stargardts
Here are my thoughts and posts from 2017...

Stargardt's Glasses
Friday, February 24, 2017

So this is interesting. Seems eSight, out of Toronto, has made good headway on its headset, and things seem to be working pretty good... but the headset comes with a pricetag of $10,000 - a bit steep, but that price will likely come down as time goes on. One hopes anyway.

Source: eSight's website

Making a Run for it.
Friday, August 25, 2017

I found this very encouraging, so I'm sharing...

As my vision degrades, I am finding it increasingly frustrating running into simple tasks that are no longer so simple. Like walking down steps.

Stories like this help a LOT with that.

Source: making a run for it

After 45 years... a potential treatment
Friday, January 06, 2017

So... I've known about Stargardt's for 40 years, which was when my mom figured out what the problems with her eyes were being caused by. I found out that I was going to experience Stargardt’s about 7 years ago. In the time between when my mom was told and when I was told, not much happened in terms of treatment, prevention, or mitigation. Since then, however, things seem to have picked up. Technical solutions like the Argus 2, a camera that WiFi's a signal to your optic nerve through an implant placed on your retina, OrCam, a device that reads to you, identifies objects and people, and provides "artificial vision" of sorts, binocular glasses, and other improvements seem to crop up more and more often. Gene therapy seems to be promising, and just around the corner. Things seem to be gearing up to put the disease behind us.

And then today, there was this:

It seems that there FINALLY is a preventative treatment available.

”In animal models of Stargardt disease and retinal degeneration, emixustat was found to stop and reverse the accumulation of A2E and to preserve the integrity of the retina. Emixustat when delivered orally was found to be generally well tolerated in human clinical studies with delayed dark adaptation being the most common ocular adverse event. Acucela is planning to explore emixustat’s potential to stop or slow the progression of vision loss in patients diagnosed with Stargardt disease in future clinical studies.”

Now I just gotta figure out how to get into one of these future clinical studies!

Another 'Bionic Eye' Story
Friday, November 20, 2015

Here's another article about the Argus that I ran across...

Source: The Herald Bulletin

iPad App that might help
Wednesday, November 18, 2015

As my vision fades, I’m starting to have troubles reading. I have to put my finger on the page to line up the words. As it gets worse, I’m starting to look to opportunities that might help to ensure I can enjoy my favorite past time for as long as I can.

I’m sure they’ll have an Android version before too long. =]

Source: Oneida Daily Dispatch

Here is a bit of Good News
Wednesday, November 11, 2015

Shortly after I got word that Stargardt' was going to be part of my future after all, I realized that while not a lot has changed since when my mom started down the path, 30 or so years earlier, there seemed to be a rising tide of treatments, aids, and potential cures for the disease. Since then, we've seen the Argus 2 enter the scene, several promising Stem-Cell and Gene therapy studies, video and audio aid developments, and medicines.

Today, I came across another treatment option (by the way, Google’s ability to send you an email when it finds something new that matches your query is MOST helpful!) being studied to help those dealing with Stargardt's Disease. It goes after the toxins in the eye, and prevents the further erosion of vision. It goes into testing in 2016, and I’m very hopeful it will be readily available in time for me to preserve a good portion of my vision.

"We are delighted to join with Vision Medicines to advance this promising therapy into a clinical trial," says Patricia Zilliox, Ph.D., chief drug development officer at the Foundation’s Clinical Research Institute. "The collaboration brings significant clinical and drug development expertise to the project, which gives us the best opportunity to move VM200 out to the people who need it."

There are currently no therapies for Stargardt disease, which affects approximately 100,000 people in the United States, Europe and Japan. The condition is usually diagnosed in childhood or adolescence. The hallmark of Stargardt disease is the buildup of toxic waste products in a layer of supportive cells known as the retinal pigment epithelium which usually leads to severe, progressive central vision loss.

A ray of hope. I'll take it.


Tuesday, October 13, 2015

So, this woman got a Argus II “bionic eye” installed, and now she can see the stars! Pretty cool stuff! I haven’t really been able to see the stars lately. Even on a bright, clear night, when my son assures me that there are "Tons of stars!", I only catch glimpses here and there. I haven’t seen the "Big Dipper" in a long, long time. For me, its one of the biggest "in your face" things concerning my eroding vision. It was something that I loved, and now it seems to be gone. But not for good, it seems. There's a lady who got an Argus II and she can see the stars again! Pretty cool, and the technology is only going to get better as time goes on. Its also limited for folks with RP, and not Stargardt's, but the diseases are similar, and once again its only a matter of time.

Source: Pakistan Today

Low Vision Binoculars
Saturday, October 10, 2015

Ran across a blurb about these glasses on Facebook where a lady bought these binoculars, and thought they were pretty good. Here comments were:
I received these binoculars yesterday and I’m pretty excited about them. With them, I am able to sit on my couch and read the guide off the television screen. (A feat I haven’t been able to do for 10+ years!)
Pretty positive feedback! she went on to say,
These binoculars are a little bit heavier then I’d like and they are [not]flattering at all. But we have to do what works best for us and not care how we look to others.

Good advice… who cares what other people t
hink! I sometimes wonder what folks think about my sunglasses – they’re pretty striking – but I’m not overly concerned… they aren’t dealing with the pain that bright lights cause!

Anyway, these glasses seem pretty cool, and a fairly viable option once I get to the point where I need them. They’re available on Amazon for about $100

They are on Amazon

Source: ESHENBACH - Better Vision Better Life

The Elf?
Tuesday, November 28, 2017

OK… now for something a little different!

And if you are visually impaired the Elf can revolutionize your independence – go shopping, go to the movies, visit friends and do it all without needing a ride.

That’s why I’m posting here, but I’m not sure about that statement… The guy demonstrating it said he has Stargardt’s disease and is legally blind… OK, maybe… but I’m not sure that careening down a road in a battery powered bike is going to do it for me when I’m blind… =]

Expanding acceptance
Thursday, November 20, 2014

It seems that the Bionic Eye is gaining more and more traction. A Canadian was hailed yesterday (Nov 19) as the newest recipient of the Argus II Retinal Prosthesis, or “bionic eye”.

I’m seriously hoping that as more people begin to utilize the device, the more feedback and data will enable the company to make enhancements faster and more reliably… and by the time I need it, it’ll be awesome!

Source: CBC.CA website

The Lack of Yellow
Saturday, November 15, 2014

My son tells me that there is a bright yellow trees in this picture…

All’s I see is brown with some orange here and there. I still enjoy the colors of Fall, just apparently not yellow. I’m trying to re-learn what ‘yellow’ looks like, now that I see it differently than I did before. It looks like a beach sand color. Unfortunately, things that are beach sand colored look that color, also.

Using crayons, markers, the fall leaves, and other yellow objects, I’m starting to figure out what is ‘light brown’, ‘beige’, and ‘yellow’. I’m noticing that there are differences, and I’m getting better about picking them out. Yellow isn’t as striking as it used to be, but at least I can get it right (most of the time) when my three year old asks me “what color is this?”

It might be sooner rather than later!
Thursday, November 06, 2014

Second Sight, the developer of the “Bionic Eye”, went public today in a $32 million IPO. This is great news… and possibly an indication that it might be sooner rather than later that there is a viable option to replace sight lost to RP or Stargardt’s and other forms of Dry Macular Degeneration.

hey’re public on NASDAQ, under the ticker symbol EYES. Pretty cool stuff!

Source: NASDAQ

A low vision resource
Thursday, October 30, 2014

Came across another low vision resource site, and thought I’d share. They have a page set up to explain Stargardt’s Macular Dystrophy, but the primary focus of the site is to expose low vision resources.
In 1997, researchers isolated the gene for Stargardt disease. The ABCA4 gene produces a protein involved in energy transport to and from photoreceptor cells in the retina. Mutations in the ABCA4 gene, which cause Stargardt disease, produce a dysfunctional protein that cannot perform its transport function. As a result, photoreceptor cells degenerate, and vision loss occurs. One of nineteen mutations in the gene (causing deletions and substitutions of amino acids) has been identified to cause Stargardt disease. The non-functional ABCA4 protein permits the accumulation of yellow fatty material to accumulate in the retina. This material causes flecks and, ultimately, loss of vision. Further research is needed to find out how the mutated ABCA4 genes affect the biochemistry of the retina and lead to vision loss.

Hopefully, since they know what the root cause seems to be, they can figure out how to keep the fatty deposits from accumulating… and hopefully that will mitigate any damage that comes as a result the build-up. As you can see from these pictures of my right eye… I have quite a few of those deposits accumulating.

Source: Living Well with Low Vision

I spy with my bionic eye…
Friday, October 24, 2014

A doctor involved in the study that produced the world’s first bionic eye has released a book, “I Spy with my Bionic Eye.” It chronicles her life leading up to being diagnosed with RP (A ‘cousin’ of Stargardt’s), including dealing with the stigma of having poor vision as a kid. It sounds like it deals with a variety of issues that folks have to deal with when facing blindness.

r. Dianne Ashworth’s “I Spy with My Bionic Eye” is an enlightening and uplifting ‘real life’ story of a woman’s journey, beginning with childhood when she was diagnosed as being myopic, or short-sighted; required to wear eyeglasses with ‘coke bottle’ lenses, she was alienated from other kids, which crushed her self-esteem. As she grew, she became more creative in dealing not only with her poor vision, but her vision of the world, as well.

Christmas is coming… might be a good book for folks dealing with the prospect of vision loss… either as a patient or a family member

On Amazon:

Source: Check out the original story

It wouldn't be fun if nothing went wrong
Tuesday, October 21, 2014

Ugh. So... a typo caused a glitch that's causing problems on my website... it'll be fixed shortly, I'm surre of it.

(yes, I know I put two "R"'s in there)

A "New" Thing: color blindness
Tuesday, October 21, 2014

I know time marches on, but when things progress slowly, they go largely unnoticed, until something jumps out at you. Yesterday, I realized something, and had an "in your face" moment with what's happening to my eyes.

I switched to a new Bible recently, mostly for the larger font (12 pt instead of 10), and when I'm reading, I like to highlight. When reading, I broke out by yellow highlighter, and tried to mark up a verse, only it wasn't working. Annoyed, I searched for another highlighter, and continued highlighting.

Only that one didn't work either.

So I got out a "dry" highlighter, and used that. I got an uneasy feeling as I colored the space... While I could see the highlighter was yellow, I couldn't tell the difference when it was on the paper. I noticed the that letters were a bit "gray", and there was a shine on the paper. Thinking it might be the lighting, I turned the lights all the way on. Still nothing.

I called my son over, and asked if he could see where I'd highlighted. "Yep... right there. Its real bright, but you missed a couple of spots."

It seems I've lost the ability to see the yellow highlighter color.

For the most part, I've been using a digital bible. My old Ryrie Study bible had a font that was getting harder to read, so I'd switched to using my tablet. I found some good apps to use, but I still missed holding my bible. I had purchased a bible about 6 years ago, but switched back to my Ryrie after a short time, because I missed my notes. When looking for something else (isn't that how it always goes?) about a week ago, I noticed that the font was larger, so I made the change. I've been using a Bic 4-color - black, blue, red, and green - and my "Bible Study Pen", which is a 4 color pen with orange, pink, light blue and black. The colors work well together, but yesterday, I decided to highlight rather than underline.

It seems that I'm going to have to switch to Orange, which I can still see (I checked). I went online and took a color blind test. I passed, but I had to guess on a couple of them - they were all pretty hard to see, actually. Its been a while for me, but I remember that previously, I had no troubles at all.

It seems my world is graying out in more ways than one.

Here's the color blind test I took:

This is pretty heartening...
Wednesday, October 15, 2014

This will only get better as the technology gets better! Here's a video that shows the first moments after a bionic eye was turned on in a patient who had been completely blind (not even able to tell light from darkness) for 33 years. He's not able to fully understand what he is seeing, but from what I understand, the brain figures it out, and the visual acuity is actually pretty good.

This video is from another story (located at: ), and it is more detailed than the "Fox and Friends" video clip, linked as the "source"...

Be sure to check out the "Fox and Friends" video, also...


That might explain why I see mice scurrying by
Wednesday, October 15, 2014

If I had a nickel for every time I thought I saw a mouse scurry past, well, I would not have to pay for a can of pop for a few days, that's for sure. When I look to where the 'mouse' is supposed to be, there's nothing there. I assumed it had something to do with Stargardt's, but I wasn't sure. Then I got an email from BrightFocus, a Macular Degeneration Research group (at some point I must have signed up for alerts from them) which covered the topic of 'Hallucinations' being reported by those who could not see well called Charles Bonnet syndrome. Apparently, its similar to 'ghost feelings' from limbs that have been cut off. 10% of visually-impaired people have them, and it seems to be the brain responding to the lack of vision inputs in the same way it responds to the lack of sensory imputs from a missing limb or appendage.

"You don't have to be completely blind, you only need to have difficulty seeing"

So it seems I could be one of the 10%. According to the video, it is more common to see faces and the like... maybe I'm starting small. =]


Not alone
Sunday, August 24, 2014

There seems to be more folks than I thought with Stargardt's. I periodically do searches to see if I can find something 'new' about Stargardt's, and then check out what comes up that I haven't noticed before. I tried YouTube, just looking for folks who have a video blog who have Stargardt's... there's a lot of us out there!


This guy is pretty cool, actually... He's got a pretty good attitude, and a pretty funny (I think, anyway) sense of humor.

It seems like most folks who 'video blog' about Stargardt's are women...

MeganWhitman - Living with Stargardt's:

This lady is in school, and she doesn't blog very much... but figured I'd link it in anyway.

Stargardt Mommy:

This lady has kids... and she posts stuff about how she deals with being a mom with Stargardt's. 

This lady talks about dealing with the reality that her vision is fading...  

She has a blog also...

I'm sure there's more... I'll add 'em as I find 'em.

More Low Vision Aids
Sunday, July 13, 2014

I found a another website that also seems to have consolidated a products for aiding those with low vision. For this one, its all they do. They also have information on a variety I haven't purchased anything, but like the last site, they seem to have a lot of things to pick from.

I was going to link a few pictures with this, but when I saved them, they added text to the graphic ""

They also said that there's a common notion that using a pic from their website is OK as long as you indicated AllAbout Vision is the source... they said that's fine for a research paper, but for everything else its against the law.

Seems they are pretty friendly folks

here's their policy:


Low-vision aids
Sunday, July 13, 2014

I found a website that seems to have consolidated a host of products for aiding those with low vision. I haven't purchased anything, but they seem to have a lot of things to pick from. They've got everything from canes to mignifiers. They even have the little balls that go on the bottom of the canes.


Gene Therapy is coming along
Saturday, June 14, 2014

This is pretty exciting news! It seems that gene therapy studies are making great headway. I ran across a recent article describing the process where a virus is used to deposit beneficial DNA into the retinal cells, infecting the patient with a cure that corrects a defective gene. Pretty wild stuff, and the best part, since it is not based on embryonic stem cells, it will be something I can take adavantage of.

Promising Stuff!

While gene therapies for retinal degenerative diseases are making groundbreaking strides in both human and laboratory studies, the most widely and successfully used human-engineered virus for delivering replacement genes to retinal cells — the adeno-associated virus, or AAV — has one significant limitation. It can't deliver relatively large genes, namely those larger than about 4.5 or 5 kilobases (kb). (Bases are the building blocks of a gene, and its size is expressed in kilobases.)

The stem cell information is here:

Take, for example, Erin Burnight, Ph.D., at the University of Iowa, who is using a lentivirus, which has the cargo capacity of about 9 kilobases, to deliver copies of CEP290 to stem cells derived from the skin of an LCA (CEP290 mutations) patient. Dr. Burnight demonstrated that the treatment effectively corrected the genetic defect in the cells. An advantage of the lentivirus is that it's already being used in gene-therapy human studies for age-related macular degeneration, Stargardt disease and Usher syndrome type 1B.


Information from Experience
Sunday, May 25, 2014

So I went back to the Stargardt's Australia website, and found a page where a guy who has had Stargardt's since age 9 gives his experience about what it has been like for him. A couple of the things he said were quite interesting.

One thing I have worried about is whether the light from a computer monitor can agravate my condidtion.

How can I protect my remaining sight?

Vision loss due to Stargardt's gets worse every time you are exposed to bright sunlight. You MUST wear eye protection when outdorrs. Sunglasses and a hat or visor should be your standard apparel for the Australian outdoors. It is my experience that UV radiation from TV and computer screens does not have a significant effect in vision loss. I say this because I have spent many years close to a computer screen using predominantly my right eye with a magnifying lens and my left eye closed. My left eye is still worse than my right eye.


Columbia Researchers are on the case
Sunday, May 25, 2014

This article is from a few years ago, but I found it interesting, anyway. Its another blurb about how eroding Vitamin A deposits (lipofuscin) in the eye can slow down the progress of Stargardt's Disease...

Slowing down the aggregation or “clumping” of vitamin A in the eye may help prevent vision loss caused by macular degeneration, research from Columbia University Medical Center has found.

Rather than changing the way the eye processes vitamin A, a team of researchers led by Ilyas Washington, a professor in the department of ophthalmology at Columbia's Harkness Eye Institute, decided to focus on changing the structure of vitamin A itself. In turn, Dr. Washington and his lab have taken a novel step toward treating age-related macular degeneration (AMD), a top cause of untreatable blindness – and Stargardt's disease, the most common cause of juvenile macular degeneration.

This might be something worth looking in to...


Magnifiers and More
Sunday, May 04, 2014

I ran across a website that has a fairly good assemblage of gadgets and the like for lowvision folks, and I figured I'd post it here so it'll be easy to find.


Using Gadgets
Saturday, April 05, 2014

I got to wondering how far things have come with Accessability with tablets, especially Android. Its getting better, it seems. My hope is that when I need these things, its going to be even better than it is now.

I'm hoping anyway

The 20/20 pen
Saturday, March 15, 2014

One of the items mentioned in the video (below) is the 20/20 pen. I looked it up on Amazon... and there they were. Yeah, they're pretty much a renamed Sharpie (it is even made by Sanford, the "Sharpie" company).

Amazon has also bundled a "low vision paper kit", to help with writing. My mom probably could have used something like this... I put it on my "watch" list for when the day comes.


Low Vision Video
Saturday, March 15, 2014

Here's a video about dealing with low vision. Its pretty obvious now that I'm heading in that direction. Its fine now, but I suppose I should start checking things out before they happen.

Dr. Deborah Kogler discusses living with low vision and how low vision aids can help make life more comfortable and enjoyable at the Macula Vision Research Foundation's 2011 SupportSight seminar in Cleveland, Ohio

Tuesday, March 11, 2014

Another year has already gone by. Time sure marches on, eh? The annual eye exam, something I almost dreaded because it meant I was going to have to get a new pair of glasses. My perscription invariably changed year over year. For the last few years, the visits have had the ominous opportunity to see how much more of my eyes had eroded out.

With the vision artifacts becoming more pronounced over the year, I figured there would be some progression, and it seems that was an accurate assumption. My right eye now has obvious eroded zones, so its probably 2-3 years behind my left eye. On my left eye, the macula is being eroded... when that goes, central vision will go away.

So, I'm another year closer to real vision impairment. I really wish it wasn't as bad as that sounds, but the reality of it is actually pretty harsh. I'm not depressed or particularly worried about it, but its sort of like the night before you know you're very likely to be laid off... sort of an anxious resignation, if that makes any sense.

The progression over the last three years is ominous, but it could be worse. There's people who have progressed much faster than I have, so I am grateful that I'm allowed to continue enjoy the view.

fundus flavimaculatus
Friday, March 01, 2014

fundus flavimaculatus... That's the 'official' name of Stargardt's, or Juvenile Macular Degeneration, which is another name for the same disease. I've always heard that Stargardt's is a disease that's based on a recessive gene, which requires both parents to have the disease. According to this article, that might not always be the case:

Stargardt's disease, or fundus flavimaculatus, represents a spectrum of autosomal recessive (although dominant cases have been reported) diffuse lipofuscin storage dis-orders that affect the RPE. The disease may be thought of as a continuum, from patients that exhibit primarily macular abnormalities to those demonstrating more peripheral forms. Patients develop excessive storage of lipofuscin within the RPE, leading to a "dark choroid" condition in which visualization of the choroid becomes more difficult with time. Older children may show progressive vision loss associated with the development of RPE atrophy in the macula and the subsequent appearance of scattered, yellowish flecks at the level of the RPE. These flecks may be reticular and have been called pisciform or "fishtail-like." They are concentrated in the macula and may extend anteriorly through the mid-periphery. The flecks, visible at the level of the RPE on stereo color or green filter photography, show only a subtle fluorescence at their margins on stereo fluorescein angiography. They typically block background fluorescence early in the process and stain late. Stargardt's disease patients show an RPE transmission defect ringing the fovea, or bull's-eye maculopathy.

I read this a lot, but it always gets a "durn" out of me, even if its in the background:

No therapy for Stargardt's disease exists with the exception of low vision support.

The source website has a lot more information... a lot of it seems to be "medical-ese", though...


Monday, February 24, 2014

I was parking today, and was having trouble finding a spot close to the door of the store. The handicap spots were open, and for a moment I thought, "Pretty soon, I might be able to get me one of those cards." It was then that it hit me. By the time I'm bad enough to get a card, its likely I won't be driving... at least I HOPE not! =]

Then came the realization... I won't be driving. Man, that's going to suck pretty bad. I'm not one to get down about stuff, but I'm sure that's going to be a dark day when it comes.

Eye Scan
Saturday, February 15, 2014

So when I look at my eye pictures from the eyedoctors (which is coming up next month... oh, joy!), the artifacts on my retina look like "blisters" or "bumps"... I actually think of them that way, even though I know they are actually dents. A year or so ago, my wife's cousin (who is an eyedoctor) did a scan on my eye to gather information about a 'non typical' retina to compare against a 'normal' one. I noticed the atrophy anomalies in that scan, but he mentioned that there are more sophisticated scanners that can do 3-d imagery. Here's an example of one of those scans on a Stargardt's eye. Clearly, you can see the dented region, which is the damage caused by the disease.

Another option
Saturday, February 01, 2014

So folks are coming out with some pretty cool stuff. I don't need it at the moment, but when I run across articles and websites I end up being encouraged, because I know that when I need it, these types of technologies will be even better than they are now.

Here's another video about it...


Check this out...
Saturday, January 18, 2014

This video is pretty cool... It brings to light things that folks don't think about very often. I'm not 'totally' blind yet, obviously, and thankfully, I'm not anywhere close to where I'd need a cane (At least I don't think I am), but this is something that crosses my mind from time to time... because I know my time is coming.

Not too sure about that.
Saturday, January 11, 2014

I ran across a quote from a website when looking for new information... "But one of the most interesting things I learned is that, in general, Stargardt affects areas of the macula at a rate of roughly 1 square mm per year. So periods of rapid visual acuity loss occur when the atrophy robs the very central area where that super-high concentration of cone cells resides, not because the disease is progressing more rapidly. So, we can all stop speculating as to why we may have experienced a big drop in acuity at different points in our lives."

I mean, I'm no doctor or scientist: I'm a programmer who is in Seminary. But it seems to me that looking at the pictures for year over year in my eyes, there's more than a milimeter of change. I drew in the veins that are visible, and you can clearly see that there are differences. I guess I don't know the actual sizes invovled, and I don't know the magnification involved in the pictures... but it certainly SEEMS more than a milimeter.


Hello 2014
Saturday, January 04, 2014

Another year. As blindness approaches, I find that I'm reflecting on how things LOOK more. I guess I'm trying to appreciate the opportunities to see things, like the kids opening presents, or a sunrise or a sunset, or the stars at night (which are already becoming less visible), and even a leaf blowing in the wind. One of those things, curiously enough, has been the last light of the new year. Recently, its been sort of a "thing", and the thought usually crosses my mind wondering if I was going to be able to see the last light of the NEXT year.

Which is what makes this year that much more odd. The last pictures in 2013 I took were of Christmas, and I didn't even think of the "last light" until earlier today.

I don't want to sound pious, but let me sound pious for a minute. I think its because I really am not concerned with losing my sight. I mean, sure, I wonder what life will be like, and I get frustrated when I can't find something that should be easy to see, but in the big picture, I'm not sad or depressed about losing my sight. Its in God's hands. Rather than view it as I'm afflicted with this horrible illness, I think I tend to look at it as He GAVE it to me. I don't know the reason, but its part of HIS plan.

So let what comes come. Will I be able to see the last light at the end of this year? Odds are, if I'm here, I'll see it. Maybe not as well as some, but I'm sure I'll be able to make it out. And if not, then, well, there's a reason for that, and I'm sure it will come to me as I head down the path.

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