macular degeneration, macular, diagnosis drusen – My Macular Degeneration Journey/Journal

What are drusen? Does it mean I have AMD? Is it drusen or drusens?

QUESTION: What are drusen? Does it mean I have AMD?
 
Short Answer
The word ‘drusen’ is plural. One of them is ‘druse’. 
Two Important Types of Cells
The retina is very complex. The macula is part of the retina. There are 2 types of cells that are central to a discussion of drusen: RPE cells (Retinal Pigment Epithelium) and the photoreceptors that turn light into sight.  The RPE cells are ‘slaves’ to the ‘master’ photoreceptors. They bring the photoreceptors nourishment to keep them alive, and they remove waste materials from them (think ‘eye poop’). If the RPEs are damaged and can’t do their job, the photoreceptors don’t function well. If the RPE cells die, the photoreceptors eventually die, too. That’s when vision loss occurs.
So what exactly are drusen?
AMD is the only type of macular degeneration where drusen occur.
Drusen are a buildup of waste material (think ‘eye poop’) under the RPE cells which are the ‘slaves’ (nourish them & keep them ‘clean’) to the photoreceptors which give us sight.

If that drusen/’eye poop’ is in the macula, it CAN be a sign of AMD (not always, you’ll see that below). The significance is that it can tell the eye professional how far your AMD has progressed and what stage it is. It also weakens the cells below it which can allow the blood vessels that feed the retina to grow beyond their boundaries and become wet AMD.

 
Click on the image to go to the source
In the middle of the illustration, drusen are shown as a yellow ‘clump’ under the RPEs and above the blood supply in what is called the choroid. Between the choroid and the RPEs is Bruch’s membrane. 
You can find a more detailed description and more illustrations on one of the best sites I’ve found: ‘The Science of AMD.’
 
Does having drusen mean that I have AMD?

Not necessarily. It depends first on where the drusen are located. It can be inside the macular and outside it, too. It’s the drusen in the macula that can be of concern.

There are two types of macular drusen: hard and soft.

Hard drusen are small and have defined edges. They are more common as we age. They don’t necessarily mean that you have AMD. Soft drusen are larger and their borders are not defined. They vary in side and shape. Your eye doctor will be able to tell what stage your AMD is by the number and size of the drusen plus some other factors).

You can find out how each stage is diagnosed on the page ‘Macular Drusen.’

Eye Poop

Today was a “get your ‘stuff’ together” day. Every once in a while it gets so that if I don’t stop and take care of the business at hand, I will be having a screaming fit.

Like last evening for example! However, I have now gotten a haircut, gone grocery shopping and cleaned the living room, as well as having completed a few other tasks, like taking the recycling. Feeling a little more in control – I probably should not say that too loudly – and ready to tackle a page Lin suggested.

That page will be on – drum roll, please – eye poop! Okay, so that is not what they are really called. Most of the world call them drusen.

In a Harvard Health Publishing article that asks the questions: what are drusen and why do I have them, the author describes drusen as “deposits of extracellular waste”. You got it, eye poop.

In younger people, the sanitation department in eyes generally takes care of the eye poop. That ‘sanitation department’ is the retinal pigment epithelial cells aka RPEs. Yes, your RPEs are supposed to ingest eye poop. But you know what? Your RPEs are into recycling, too! They are discovering your eye is its own, little ecosystem. James Hurley at the University of Washington at Seattle and his team have discovered RPEs and the retinal cells are in this close relationship in which the wastes and byproducts of metabolism in one type of cell are the food another type of cell needs. Mess up in one part of the system and everything goes to Hades.

Why would the RPEs stop doing their recycling thing? No answers, just theories but one thing is for sure, age has something to do with it. Most people over 60 have at least a few piles of eye poop hanging around.

You know how it goes. Things don’t seem to work as well when we are older. Some messes pile up.

http://patient.info/health/age-related-macular-degeneration-leaflet

Eye poop becomes a problem when it starts wiggling in between the RPEs and the Bruch’s membrane. Bruch’s membrane is where the RPEs get the nutrients they need to feed the photoreceptors.

Think of it as a huge landslide standing between you and the grocery store. If you cannot get to the store, you go hungry and may die. If you die, those you are responsible for die too. Same with RPEs and photoreceptors.

Again, no one is exactly sure why some people get away with just a few, stray piles of eye poop and others have dozens. There is an underlying error or errors that have yet to be proven. The researchers are working on it.

The Harvard paper points out drusen aka eye poop do not cause AMD. They are just manifestations of the disease process.

Hope that was a help. Hope you understand things a little more thoroughly. Night!

Written March 18th, 2018


Next: Another Cautionary Tale

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Diffy Cults

Just getting a quick page or two written before I am off. That is ‘off; as in ‘off on vacation’ not as in “she is a little bit off.” That happened quite a while ago.

Still hoping to get my loaner CCTV before we leave but I doubt it will happened. A friend of my husband’s is watching the house. He promised to take delivery and pack up my machine to send for repairs.

I am still hoping against logic that this will all be settled by the time we get back. Cockeyed optimist; so shoot me.

Of course, I have found several interesting web articles now I don’t have a lot of time to go over them and no CCTV. Since I don’t have my machine to put them on to read, I put one on NaturalReader. Let the iPad read to me. [Lin/Linda: to read all about NaturalReader, go to Sue’s page Let Me Read to You.]

Some of the pronunciations are a bit ‘off’ as well. D.O., doctor of optometry, comes out as ‘odd’. I guess she calls them as she sees ’em!? She? It is a female voice on my machine. Not sure if I could change it if I wanted. Never tried.

Found something called Practical Guidelines for Treatment of AMD. The pamphlet says with all of the rapid advances in potential treatments for AMD it makes it “diffy cult” for practitioners to know what will be “Benny Fish All” to their patients.? Gotta watch those “diffy cults”. Not to mention that Benny Fish All. OK, OK, so I am easily entertained.

The article suggests doctors are not proactive enough in the early stages of the disease. It suggested something like 78% of AMD patients have substantial, irreversible vision loss already at the time of the first treatment. This includes 37% who have become legally blind by the first treatment. Yikes! It goes on to state not all drusen are a result of AMD and doctors may hesitate to make the diagnosis on the criteria of drusen alone. There is also the patient variable involved. Will the patient believe she is losing her sight and do something if there is no acuity loss? Will she freak? Stay tuned….

The article suggests using dark adaptation problems to emphasize there is a real problem even when acuity seems just fine. It quotes statistics dark adaptation is an excellent predictor of age-related macular degeneration and is, indeed, 90% accurate!

In other words, if you know someone who has a lot of problems with dark adaptation, suggest they be checked for AMD. There is evidence problems with dark adaptation can be detected up to three years before the disease can be detected through clinical measures.

Later….There is a lot more in that article, but I have to sign off here. Too much over 500 words and I turn into a pumpkin. Watch out for those “Diffy Cults” and if you run into “Benny Fish All” say hello for me. After all, he is the kind sort. Me, I’m going to crank up my loaner CCTV. It came today!

Written October 27th, 2017 Continue reading “Diffy Cults”

Slogging Through Again

I am waiting for my ride to go hot air ballooning and working on deciphering an article Lin sent me. Once again the question is how much loss can we expect from dry AMD, especially geographic atrophy? Regillo told me 60 degrees of arc loss would be extreme but my local retinologist said some people in their 90s can have GA encompassing the entire retina. Ouch.  [Lin/Linda: Sue wrote about ‘degrees of arc’ in her page Love Wikipedia.]

So, here be me again, slogging through another article I about half understand. Want to slog along? I would appreciate the company!

The article is entitled Clinical Endpoints for the Study of Geographic Atrophy Secondary to Age-Related Macular Degeneration published October, 2016. You there in the home audience feel free to download it and play along!

First of all, I latched on the statement (paraphrasing) “drusen may not result in actual visual acuity loss but the effects of having drusen can be seen in functional deficits very early in the disease process”. What functional deficits?

A 2008 paper by Feng Qiu and Susan Leat found people with very early AMD have loss of “low spatial frequency static contrast sensitivity”. Yippee. Once more down the rabbit hole. It appears – according to the appendix of Emergent Techniques for Assessment of Visual Performance – spatial contrast sensitivity has to do with lighting, the place on the retina where the image is falling and something called field size as well as time factors and the orientation of the image.

Boiled down it has something to do with how sensitive we are to variations in the data our eyes are gathering. I think. Don’t hold me to it. Just know that 20/20 vision with drusen might not be as perfect as we might think.

We talked about reduced dark adaptation before and this is also a problem in early AMD. Apparently there are several effects early drusen have that have nothing to do with acuity.

The next thing I had to look up – in the same paragraph, mind you! – was information that might help me understand a statement suggesting advancement to GA from early AMD may in part depend upon the presence of “reticular pseudodrusen”. So now we have drusen impersonators????

According to Association of Pseudodrusen and Early Onset Drusen by De Bats, Wolff et al (doesn’t that team sound perfect for the Halloween season?) pseudodrusen form on top of the RPEs and not below them as do ‘real’ drusen. There seems to be a connection between having ‘eye poop’ aka drusen on top of the RPEs and early and rapid develop of advanced AMD.

And the above was all in one paragraph! I may be a very long time in deciphering this baby.

So what I have discovered so far is this: visual acuity does not tell the whole story about functional vision loss when it comes to early AMD. If you have drusen be aware your contrast sensitivity and dark adaptation are probably already compromised. Secondly, pseudodrusen, which is eye poop on top of the RPEs, can predict a more rapid and earlier progression to GA.

Have I found a thing about GA outside of the macula? Not yet, but I am still reading! Talk at ya later!

written October 7th, 2o17 Continue reading “Slogging Through Again”

Sisters Are Doin’ It For Themselves

I have paid a lot of attention to the male movers and shakers in vision research. Perhaps it is time to note the contributes of the women. Recently I have come upon short articles about the research of two.

Sally Temple, SUNY-Albany, and her colleagues recently published a paper on how nicotinamide can suppress the progression of AMD. Nicotinamide is a vitamin B3 derivative.

Dr. Temple took pluripotent cells, that is stem cells, from people who had AMD and those who did not. She manipulated the stem cells to become retinal pigmentation epithelial cells and grew them in her lab.

One of the first things Temple and her team noted was the cells from the AMD people acted differently from the RPEs grown from healthy subjects’ cells. The cells from people with AMD produced different chemicals. The chemicals were the same ones that figure in the production of drusen and contribute to inflammation.

These were RPEs growing on a culture medium in a glass dish. There was nothing else to contribute to the formation of the chemicals. The chemicals had to be coming from the RPEs. And, with no other possible influences, the cause for the production of these chemicals pretty much had to be genetic.

The fault, dear readers, is not in ourselves but in our genes. One more tally in the genes are destiny column.

But the good news is, when they squirted (or whatever) nicotinamide on the offending RPEs, things improved. Chemicals that are responsible for the bad things were less and the RPEs survived longer.

Perhaps if we find a way to get nicotinamide directly into eyes, we will get the same results in vivo as in vitro. Worth a try.

Masayo Takahashi is a Japanese researcher. Takahashi has been experimenting using pluripotent cells taken from the same people they are going back into. No embryonic cells required.

There is excitement about this new procedure not only because of ethical issues. There are indications this procedure will be cheaper and faster to implement. In additional, they are thinking people can ‘bank’ their stem cells. These can be used either for ‘repairs’ in the original cell ‘owner’ or they can be given to other people who are immune matched. (Sort of like blood type matching. Don’t want the body getting up in arms over the ‘invading’ materials.)

Bottom line is the ladies are out there rocking it just like the men. They continue to come up with great new findings and each one takes us a little bit closer to effective treatments and maybe – just maybe – even a cure.

To copy Lin’s use of old song titles, “sisters are doing’ it for themselves”. And they are doing it for us, too! Continue reading “Sisters Are Doin’ It For Themselves”

Hindsight is 20/20

Good evening! How are you all?

Lin has noticed I seem to have written soooo many pages they are overwhelming and confusing some people. She feels this is particularly true for some of the newbies who probably feel like they have walked in on the (boring and confusing) middle of a movie. [Lin/Linda: to be clear, those are Sue’s words! ::grin::]

Understood. Some of you are back in the shock and doom phrase and I am talking about getting newspapers on your phones and other trivial matters. Who wants to hear about that sort of thing while your world is unraveling?

In the interest of pointing you towards something that might actually be helpful, Lin is republishing some earlier pages for your attention and discussion. And I – always helpful – am going to add to the confusion by writing another page!?

This page will have a catchy title thanks to Lin, but right now I am going to call it “What I know now that I wish I had known a year and a half ago”.

First, you are not going everything black and dark blind.

It is not good but neither is it quite that bad. You are losing central vision. Things will not be good for anywhere from about 15 to 60 degrees of arc. Since normal visual fields are 170 or so degrees of arc, you have the potential to lose about a third of your vision. Not anything to cheer about but better than 100%.

You may not be doomed to progress to end stage AMD.

About 15% of patients become ‘wet’. About 15% progress to geographic atrophy. That means you – starting out with drusen and a diagnosis of early AMD – have a 85% chance of dodging the proverbial bullet for end stage AMD. You may very well not get as bad as I am and a year and a half after my second eye went to hell, I am still functional. [Lin/Linda: a person can have both wet AMD and geographic atrophy in the same eye.  I don’t what that does to the %, if anything.]

You did not cause this.

Yes, AMD is caused but it was not caused by anything you did or did not do. The causes are in your genes. This is a heritable disease. There are dozens if not hundreds of genes that are being investigated to try to figure out how AMD is created. It appears AMD may just be the result of a genetic ‘perfect storm’ and there is no one to blame.

There may come a time you are seeing things.

I saw some odd stuff when my brain was working overtime to assign meaning to the faulty images my eyes were sending it. You are not psychotic (I hope you are not psychotic). This is Charles Bonnet Syndrome. When your brain gives up trying to assign meaning to false signals you will stop seeing weird ‘stuff’. In the meantime, enjoy the fantasy.

Point number last: There is an amazing amount of hope for treatment and eventually a cure for AMD.

Research is going on everyday. New discoveries are announced with regularity. The medical community is hot on the trail of something that will arrest the progression and may even reverse this disease. All we have to do is hold on.

OK. Those were my biggie when I first lost my second eye. What are you worried about? Please share and we can discuss it. Continue reading “Hindsight is 20/20”

Always Learning More

Hey, there! I think I have found a good article on macular degeneration, our favorite but somewhat distasteful topic. The article is in Webvision and is entitled Age-Related Macular Degeneration. Another catchy title. The main author is Hageman.

Did you know the name up until around 1990 was ‘senile macular degeneration’? Makes it sound like our eyes have lost some of their mental faculties. Glad that was changed!

Also discovered the fovea is the center of the macula. It contains the highest concentration of cone photoreceptors and is the only region of the retina that can attain 20/20 vision.

I think when my optometrist said I had such an abrupt vision loss because the deterioration had reached the center of my macula she was talking about the loss of my fovea. That means 20/20 vision is no longer possible for me. Even if I use prisms or eventually get that eye max mono thingee, things will not be ‘perfect’. [Lin/Linda: she means the EyeMax Mono lens implant.]

This article says macular vision is 10% of vision! Estimates of degrees of arc of potential loss seem to be getting better, but don’t get too excited. Remember we are talking my interpretation of things I read. It is guess-work. I know nothing.

Although I used to think hard drusen sound more ominous than soft ones, it is actually the other way around. Hard drusen are smaller and soft ones are larger. If they are looking in your eyes and mention soft drusen, you have more of a problem than if they see hard drusen.

I thought that all dry AMD would progress to GA (geographic atrophy) if the person lived that long. This article says only 10 to 15% of dry AMD patients progress rapidly enough to ‘achieve’ GA. Interesting.

That means my visual state is something many of you will not have to experience. That is a good thing! And FYI? I am functional so you can remain functional as well.

For you ‘wet’ folks, the article once again cautions you to stay on top of things and get your shots. Left to its own devices wet AMD progresses to a cicatrical stage. Cicatrix is a fancy word related to scars and scarring. Disciform scars occur when fibrous tissues develop in Bruch’s membrane between the RPEs and the retina. Scarring is, needless to say, not good and can result in severe vision loss. Bottom line for this paragraph is: do not allow bleeds to happen to you!

Closing in on my 500 words and I still have pages to read in this article. I think I will close this page, read some more and start another.

And FYI, I emailed by doctor. And – while he also believes the increased density/opacity of my blind spot is related to expected disease progression – I am going in for a vision screen in two days. Perceivable changes in your vision? I expect you to call, too. Check it out.

written April 25th, 2017

Continue reading “Always Learning More”

Wintry Mix

It was a rather sloppy, cold day today. We had what the weather services refer to as a wintry mix. My ride to exercise classes decided she did not want to go out in the mess. Understandable, especially since I landed flat on my back twice at the dog park. Ice under the snow and I walk with a heel strike. Heel down and whoopsie! Yet another reason I need to keep exercising, though.

Being in decent shape, I tend to bounce and not break. Fortunately there was no one nearby to hear the crazy old lady cursing and laughing at herself as she lay in the snow….twice.

Anyway, I ramble. Not a bad day. We took the recycling and went for pizza. Took Beastie Baby to the dog park. I finished a short report for work and I am now – gasp- cooking. You know I have run out of things I even remotely enjoy when I get domestic.

I could be willful. I could get all pissy and declare if there is nothing I want to do to do, I will do nothing! That will get me nowhere but miserable. Problem is, I am stuck in the house with myself! It is after dark and we are now getting freezing rain. I need to be willing to entertain myself with what is available.

I am lousy company even for myself when I am bored and miserable. Willingness as opposed to willfulness needs to be the choice.

And while things are in the oven, I am reading an article Lin sent me. When I was a teen, our family doctor thought I should go to medical school. Maybe if I had done that, I could actually decipher this thing!

The Saudis wrote this article, Update on clinical trials in dry Age-related Macular Degeneration. It is a review of the research up until November, 2015. The abstract says none of the biologically-oriented therapies have resulted in vision improvement, although I would say some of them probably slow the deterioration process. It also says the stem cell studies show promise. Yippee! That means if I hope to exceed my basic goal of stopping the progress of the disease, I have chosen well. (If this is the first of my pages you have read, I am applying to two stem cell studies.)

I have picked up a couple of facts from the article. Geographical atrophy – the divot where my photoreceptors used to be – is “sharply delineated” and by definition at least 175 microns. I assume that is across. 175 microns is .00689 inches. That is a tiny little space to be causing all these problems! The divot also needs to be deep enough to show the blood vessels in the choroid.

I also found out that hard drusen are a sign of normal aging. It is the soft drusen that are the troublemakers. There are all sorts of other drusen, too. It all appears rather complicated. [Lin/Linda here: click here for my post about drusen.]

I will try to be willing and slog through the rest of this article. It is informative, just over my head. Let you know if I learn anything.

written 12/17/2016

Continue reading “Wintry Mix”

A Human Doing

Moving ahead in time again, I found myself having taken leave of  ….a turn of phrase makes me want to say ‘leave of my senses’ even though that is not how I was thinking when I started this sentence. But maybe I did. People (hello, Lin) told me to pace myself and that this was going to be a marathon and not a sprint, but I am a go-er and a do-er with the proverbial motor in my butt. I do not hang well.  I was out of work and pretty much grounded. I am happiest when I have a project so – curse it – I and my vision loss are going to be my project.

I am a go-er and a do-er with the proverbial motor in my butt.

I had made an appointment with my optometrist originally hoping that something as easy as a new pair of specs would solve the problem. I kept the appointment even though I was not holding out a lot of hope for a ‘spec-tacular’ rescue (sorry, could not help being goofy there).  I got a few things out of the encounter. One was the information that while I thought my eyes had suddenly and inexplicably self-destructed, the problem was actually part of the continuing process of degeneration.

The center red dot represents the macula. Each consecutive ring from the center to the periphery represents another drop in acuity level.

According to my optometrist, the drusen had reached the center of my left macula. She explained the macula is set up like a dart board. There are greater values in the middle where acuity/vision would be a 50. When the drusen reached the center of my macula, I lost my ’50 points’ vision.  Add to that a progression in my right eye and I was up the proverbial creek.

 

 

Eccentric viewing was a skill my optometrist thought I should learn.  Now, there are a number of people in my life who have always thought my views were eccentric, but that was not what she was talking about. Apparently, eccentric viewing is using the intact – but not as finely tuned – cells of the rest of the retina to do the jobs of the macula. Many people with central vision loss learn to read with their peripheral vision. Sweet trick if you can master it. I think I need Eccentric Viewing 101. I have been practicing looking out of the corner of my eye or focusing just a bit above and to the right of what I really want to see. Sometimes it works and sometimes it doesn’t. Apparently, this is going to take more than a couple of days to master.

My optometrist also suggested I wait until the Bureau of Blindness and Visual Services (BVS or BBVS) appointment to pursue low vision services. Since I was – and am – planning on going back to work, there was a chance this organization would help me with some of the expenses of equipment.

Wait. Patience. Really???????? You don’t know me too well, do you?

I had already contacted the Bureau of Blindness and Visual Services, a part of the Office of Vocational Rehabilitation (OVR). I had an appointment set up with the vocational specialist they had assigned me. When I first spoke with my BVS counselor I had warned him I am not a patient person. In fact, I am a doggedly persistent pain. I suggested he give me an assignment. It would be self-defense for him and would give me something to do. My assignment? Get copies of my eye evaluations and put together some samples of the work I had done and that I wanted to return to. Yes. I was on the job.

I warned him I am not a patient person. I told him to give me an assignment and he did.

Meeting with my BVS counselor, I signed the usual mess of legal forms and found out I was going to get three different services. One would be low vision support, one would be technology and one would be ‘habilitation services’…whatever that is. I am hoping it has something to do with lighting.

I would get low vision, technology, and rehabilitation services.  Let’s go!

Written February 2016. Reviewed September 2018.

Continue reading “A Human Doing”

The Man Behind The Curtain: The Wizard of Wills

For a rock star of retinas, Regillo, was not all that imposing. I finally got to see the man after multiple tests by multiple technicians. Towards the end of the gauntlet, I asked the girl if everyone went through so many tests. She confided in me that many people do not get as far as I got. That was certainly encouraging. My inner voice had been telling me I was on the right track. The stars seem to be aligned. However, this was the first outside confirmation that I had chosen a good path.

I had chosen a good path. The stars seem to be aligned.

When the good doctor came into the room, I was studying the scans of my left eye–not quite sure why, but he appeared to be amused. Perhaps this was highly unusual behavior in a patient with Age-Related Macular Degeneration.

Regillo proceeded to challenge me to tell him what I saw. So I told him. The lower area was Bruch’s membrane. This membrane is the connection to the proverbial greater world. It brings nutrients to the RPEs and takes away the garbage. The level above that contained the RPEs. It also contained yellowish piles of eye poop more appropriately known as drusen. Level above that were the photoreceptors. The divot in the top was geographic atrophy and the reason I was there.I might have impressed him. After all, I am more than just an impaired eyeball.

I am more than just an impaired eyeball.

Strange, staccato, conversation followed. I told him I wanted to read the article on the phase 1 results when it came out. It was out and he gave me the citation. I told him I had every intention of being in phase 2. The conversation was a bit of a tennis match. At times we are even finishing each other sentences. I felt as if we were definitely on the same page.

Also, talking to the doctor I felt as if we were in a cat & mouse game and I was the mouse. He seemed overly interested. No, not that way, I felt like I was prey but in a professional, scientific way. It was like he had found a live one. After reading the phase 1 results that were published in Lancet last winter, I figured out why. The mean age of the cohort for the phase 1 study was 77 years of age. The team was planning on doing a 15 year longitudinal follow-up on the study. There was now no confusion in my head as to why Regillo was looking at me as if I were a live one. Hell, in 15 years, with subjects like that, I was going to be the only live one!

The mean age in the phase 1 study was 77 years of age. That means in the 15 years of the study, I was going to be the only live one!

Written February 2016. Reviewed September 2018.

Continue reading “The Man Behind The Curtain: The Wizard of Wills”

Resources

June 2023 There’s an announcement that since Sue has not written any new journal pages for some time, the site has been archived until we can decide if the work necessary to make sure all information is accurate and up-to-date can be made. In the meantime, you’ll get some pages ‘not found’ or ‘private’ until that decision has been made. The emphasis for several years has been on the Facebook group.

2/14/2022 Because of the rapid and constant growth of our Facebook group, I cannot keep this list updated.  I have a large amount of information available in the Facebook group in Guides which are like chapters in a book or lessons in a course. Plus, in 3 years, the amount of information in the posts and comments is quite substantial. I recommend that you join us there where you can get the information and the support to help you in your journey.  Thanks for understanding. Hope to see you there! Lin/Linda…
I’ve added some pages from that group that might be of interest to you.

Frequently Asked Questions

Click here for the list of Frequently Asked Questions from our Facebook group.


AREDS2-based Supplements

There are several pages on the site that explain what AREDS2 means and who the AREDS2-based products are for. Click here to go to a list of articles.

AREDS2-based Supplements With 0 or 25mg of Zinc

Click here for the list.


Navigating

There are a lot of links here.  I’ve set up this page so that when you click on a link (words that are underlined & in blue or green), a NEW tab will open in your browser and this page STAYS WHERE IT IS.  When you are done with the new page you opened, just close it.  You do NOT need to use the back option.  If you click on a link and the new page replaces this one, I’VE MADE A MISTAKE so please let me know by sending me an email at light2sight5153@gmail.com.  Let me know exactly which link or links do not open a new tab or window.

Errors: If you click on a link and you get a ‘page not found’ error, please let me know by sending me an email at light2sight5153@gmail.com.  Let me know exactly which link or links do not open a new tab or window.

Additions: If you have a link you’d like to add, please email at light2sight5153@gmail.com.


Topics-click below to move to a topic

Links We Like

  • Click here for a GREAT resource where you answer some simple questions and you get a customized guide based on your responses
  • Click here for a great glossary
  • Click here for Low Vision Resources: A List of Lists (such as 8 ways to slow AMD, 15 tips for family and friends, etc)
  • Videos
    • Click here for several videos
    • Click here for the UK Macular Society’s Say Hello to Mac
    • Click here for one that uses illustrations and animation (explains how wet AMD progresses and how the injections work)
  • Click here for a description of dry vs. wet AMD (we are not recommending any products in this article)
  • Click here for an article about depression after diagnosis
  • Click here for a very comprehensive page about wet AMD
  • Click here for a very comprehensive page about dry AMD
  • Click here for a FAQ (Frequently Asked Questions) that answers a long list of questions such as ‘will resting help my eyes?’, ‘Can I see for myself if my retina or macula shows any signs of damage before I have symptoms?’, ‘why don’t new eye glasses help?’, ‘what is meant by degeneration?’, ‘is a macular hole the same as macular degeneration’, ‘I have had dry MD for years. Does this mean I’m going to get wet MD too?’, ‘No one else in my family has MD. Why did I get it?’, ‘can drusen be treated?’, ‘I have changes on the Amsler Grid, does this mean I have MD’, ‘I have Wet MD but my Doctor says there is nothing he can do or no treatment available. Why is this?’
  • Click here for a short introduction to stems cells, what they are and how they can be used.

See what vision is like at the various stages of AMD

Click here to find ways to see simulations of what vision loss due to AMD is like at various stages.


Glossary

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Websites devoted to AMD and Other Forms of Macular Degeneration

listed in no particular order

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Websites containing information about AMD and Other Forms of Macular Degeneration

listed in no particular order

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Support

I’ve not been able to verify if these are kept up to date. Let me know if you find that they are not or if you have one  you’d like to add.

Message Boards including ones from
By postal mail

I don’t know if these are still accurate.

  • Association for Macular Diseases
    210 E. 64th Street
    New York, NY 10021
    (212) 605-3719
    – Offers education and information on macular disease through seminars, newsletters, and a hotline. Offers counseling to patients and their families.
  • Macular Degeneration International
    is now a part of Foundation Fighting Blindness
    Toll Free Helpline 1-800-683-5555
    EMail: MDInfo@blindness.org
    – Provides support for people affected by inherited macular degeneration including Stargardt’s disease.
Start Your Own
  • Vision Support Group-download video presentations  This group provides free information and support through presentations to groups of senior adults affected by macular degeneration and related retinal diseases.  You can join & get access to their materials so you can use them in your own group.
On the phone/telesupport

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Where to find services

  • In the US: click here to find a low vision center, retina specialist, state agency, ophthalmologist
  • In the UK: click here to support services (listed on the right side of the page) such as skills for seeing, counseling, access to treatment…and more
  • In the US: click here to search for a wide variety of services (more than the link above)
  • In Australia: click here to find an ophthalmologist and optometrist
  • Worldwide: click here for resources worldwide

Resources for Students

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Books and reading materials

Specific Titles

Sources of Books

Formats: Braille, large print, e-book and audiobooks

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Videos

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Personal stories of living with AMD

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Online newsletters

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What is AMD?

Wet Form
Dry Form
How fast does AMD progress?
  • A good article about how difficult this is to answer
  • Great video that explains why early detection is important especially when detecting the change from dry AMD to wet

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What is Stargardt’s Disease?

Also called Stargardt’s Disease (SD) or Stargardt Macular Dystrophy (SMD) or Juvenile Macular Degeneration (JMD), it’s an inherited, juvenile macular degeneration. The progressive vision loss associated with Stargardt disease is caused by the death of photoreceptor cells in the central portion of the retina called the macula.

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The Science Stuff

Role of RPEs

Geographic Atrophy

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Symptoms

Charles Bonnet Syndrome/Visual hallucinations

Other problems with vision & AMD

  • problems with visual acuity, photostress, blindspots, color vision, sensitivity to light, depth perception
  • eye problems that have similar symptoms as AMD:

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Risk factors

Age

  • Age is a large factor but can start earlier
  • Much less common are several hereditary forms of macular degeneration, which usually affect children or teenagers. Collectively, they are called Juvenile Macular Degeneration. They include Best’s Disease, Stargardt’s Disease, Sorsby’s Disease and some others.  See Stargard’s Disease section above.

Diet/nutrition (working on this section)

  • diet low in various nutrients & high in others have been linked to AMD.
  • See Nutrition and Vitamins/Supplements under Self-care/self-maintenance below.

Race

Gender

  • AMD more common in women perhaps because women live longer than men

Uncontrolled high blood pressure

Uncontrolled high cholesterol

Smoking

Blue Light

Eye Color

Aspirin & other medications

Other possible causes

  • Biological Process in Wet AMD – some evidence that the photoreceptors are starved by the lack of food (oxygen & nutrients in the blood) and the growth of blood vessels is to compensate for that.

Connection between AMD and Alzheimer’s Disease

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Treatments

  • FDA approved options in the US, injections, implantable telescopes, laser treatment (also outside the US)
Injections for Wet AMD
Telescopic implants
Are there new treatments in the pipeline?
Vitamins (see Self Maintenance/Self Care section below)

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Research/Clinical trials

 

How can I become a part of a clinical trial?

  • A list of sources of information about clinical trials and how to find out for you to participate in.
  • You can search for clinical trials from the links above
  • There are registries where you sign up and enter information about the status of your eyes.  Researchers will use this information to find people that match their research and contact you.  Click here for more information about these registries in the US and elsewhere

Gene Therapy

Bionic Eye/Retinal Implants

  • What is a bionic eye?  It’s also called retinal implant or retinal prosthesis.   Implant is put in retina, camera worn by person sends image to implant which stimulates optic nerve
  • Click here for overview of retinal implants including videos of how it works & interviews with people who have them.
  • March 21, 2016 UK Bionic eye being tested
  • Here’s an article about one being developed at Carnegie Mellon institute in Pittsburgh, PA.

Nutritional Supplements

  • See Vitamins/Supplements section below.

Stem Cells

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Coping with low vision

Low Vision Aids

Wearable Technology

  • coming soon!

Suppliers of low vision aids

Financial Help

Sunglasses

Lamps

Transportation

  • A website for the US where you enter your zip code and transportation options for your area will be shown.

Bioptic Driving

Depression

Checking vision

Amsler Grid

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Self maintenance/self care

Low vision rehabilitation

Vitamins/Supplements

Nutrition

Exercise/Activity

 


More to come, you can check out these posts now

Video: Overview of Assistive Technology for People with Low Vision

Highlight: How do I use Zoom for Apple products?

Highlight: What about Apple’s accessibility features?

News: Top 10 Low Vision Aids for AMD

 


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Home

Research

Not being one to be told there’s nothing I can do about something, I went back to my research. There seem to be a couple of different avenues of research. They were working on lasers to blast the drusen, aka piles of eye-poop but it looked to me like a hoarder intervention. Somebody comes in and cleans up the mess one time. Problem solved for now but not later. They would have a clean place to live but would eventually start to become messy again. The second thing I found looked more like the Merry Maids that were cleaning up regularly. However, it did not solve the problem of who is going to feed the Master photoreceptors? The third option was to essentially put the RPE Servants that were left on steroids. The live ones would work harder but would that not mean they wear out more quickly?

There’s research focused on cleaning up the ‘eye-poop’ called drusen.

There was one I liked, OCATA, originally known as Advanced Cell Therapy (ACT) , that was trying to replace RPEs. They were actually giving the little guys some help in order to save the Master photoreceptors. The way they were doing this was with stem cells.

There’s research using stem cells to replace the RPEs.

Although some people see stem cell research as cutting up dead babies, this is not the case. There are several lines of stem cells that have been derived from fertilized eggs that were never implanted. Some of these lines of stem cells are 20 years old. They have been massaged and manipulated so that there would never be the possibility that they could become functioning human beings. If they were not being used for research they would be flushed down the proverbial toilet.

Stem cells can be harvested from old fertilized eggs not dead babies.

The research that interested me–and still interests me–involves stem cells that have been developed specifically to become RPE cells. The theory is that replacing RPE cells with new ones and giving the little Servant guys some help will allow more photoreceptors to live and turn light into sight.

So where, pray tell, does one find someone to do this procedure? The problem is that this is very new research. It has worked on rats and other traditional lab animals (and you college psychology students, I am not speaking of sophomores). However, work on human subjects is just beginning. At the time of this writing, hospitals in Florida, Massachusetts, California and Pennsylvania as well as in foreign locales such as London and China have only completed phase 1 research. Phase 1 of any clinical study is the safety and tolerability portion. [Lin/Linda: it’s 2018 & some of these studies have advanced to the next phase or phases. The links before will give you current information]

Warning: there are doctors and clinics in the US that are offering costly stem cell treatments that have NOT been proven safe or effective through research.  Before you enter into any stem cell treatment, please do your homework!  Click here for an excellent article called Nine Things to Know About Stem Cell Treatments.

Click here for current research using stem cells for Macular Degeneration

Phase 1 results have been extremely promising. For those who are capable of using the web, there is a Lancet article by Schwartz and Regillo that summarizes the study. Essentially, they found the stem cells did not do anything strange or different when implanted in eyes. Preliminary data suggested that it was safe and tolerable. Even more exciting, they found positive therapeutic effects. A great number of the people who had volunteered and participated in the study showed cessation of deterioration and even improvement.

Phase 1 trials using stem cells is VERY promising.

So why not replace the photoreceptors as well as the RPEs? After all, when the RPEs die, the photoreceptors die. Would it not be reasonable to replace them both?

Unfortunately, medical science is not to this point as of yet. They have been successful in growing photoreceptors in the lab. They have been successful in implanting photoreceptors in the eyes of rats. The only problem is that these will not connect into the neural net. It’s sort of like having invented a cell phone without having a tower for it to work through. You can talk on your phone all day but the message goes nowhere.

They can grow photoreceptors in the lab, implanting them in rats but they won’t connect to the neural net.

That said, they are still working on it very diligently. Some of the literature suggests that it will be quite awhile. However, it will be coming.

If you are interested in seeing some of the studies that are being done on eyes and other medical research, I would invite you to go to the clinical trials website. It is a government website that lists all sorts of fascinating things. Many of them are looking for clients.

You will discover that there are dozens, if not more, of studies that are related to eyes. There are multiple studies related to Age-Related Macular Degeneration. So why would that be?

Someone, I am not remembering who at the moment, has launched the Audacious Goal Project. The Audacious Goal Project is aiming to eradicate blindness in the lifetime of some of you younger folks.

Click here to learn more about the Audacious Goal Challenge in Vision Research and Blindness.

Like the name says it is an audacious goal!

Why now?

And questioning again, why now? What is happening that vision is such a hot topic that we need a national program to deal with blindness?

The truth of the matter is, the pig through the population python is getting towards the end. We baby boomers from the 50s and the 60s have always presented challenges. We have always been very popular and our hot topics have been the topics of the nation. When I was a little girl, they were building elementary schools left and right. Then everything was sweet 16 and on through my lifespan. Right now, everything is security call buttons and retirement accounts. We drive the economy.

We baby boomers from the 50s and 60s have always presented challenges.

Because there are so many of us, our concerns are essential. One of our big concerns is vision. According to my research, AMD is the leading cause of blindness in the developed world. In the United States alone there are as many as 11 million people who have some form of AMD.  They are predicting there will be 22 million by 2050! 

This is going to be a massive drain on the country. When somebody suddenly realized what the numbers were going to look like, they decided they had better do something to ameliorate the problem. Thus, all the research.

Click here for more facts & figures from 2016

As many as 11 million people in the United States have some form of age-related macular degeneration. This number is expected to double to nearly 22 million by 2050.

Written in February 2016. Reviewed September 2018.

Continue reading “Research”

The Science Stuff

Now comes the science stuff. Your eye has an area that takes care of the background and an area that takes care of seeing the stuff that you really want to look at. The part that does the seeing of what you really want to look at is called the macula. It is part of the retina which is the inside back layer of the eyeball. The retina converts light and images into electrical signals that are sent to the brain—light into sight.

Click on the image to get a detailed explanation of the diagram

 

The macula is made up of the photoreceptors, rods and cones, and the retinal pigmentation epithelials, RPEs for short. There are other parts of the eye, but this is Age-Related Macular Degeneration for Dummies.

 

 

I am not a physician nor a scientist.  There is quite a lot of information on the Internet if you’d like more details.

According to what I have read, the photoreceptors have the important job of turning ‘light into sight’. However, they are somewhat prima donnas and not very capable of taking care of themselves. I refer to them as the Masters. The RPEs are the Servants. Their job is to do everything for the Masters that the Masters cannot do for themselves. The Servants (RPEs) go to the store (the blood vessels in the choroid) and bring home nutrients for their Masters (the photoreceptors). They cook up a concoction of pigments and feed their Masters. They also clean up after their Masters.

The photoreceptors are the Masters, the RPEs are the Servants who feed and clean up after the Masters.

The trouble comes when the Servants/RPEs are not doing their job anymore. One of the first signs of AMD is the presence of something called drusen.  My reading very nicely indicated that these are fatty, metabolic byproducts of the photoreceptors’ job of turning light into sight. Basically, it seems to me that they are piles of poop. These piles of eye-poop suggest that the RPEs are not functioning as they should.

When the RPE Servants don’t clean up the eye-poop, it piles up & creates all kinds of problems!

As the eye-poop builds up, the environment becomes more toxic to the Masters, the photoreceptors. The Servants, the RPEs, also are not doing an extremely efficient job of feeding their Masters. As a result, both the RPEs and photoreceptors start to die. This causes the vision loss.

The Masters and the Servants die.  That’s what causes vision loss in dry MD.

Written in February 2016. Updated September 2018.

Continue reading “The Science Stuff”